Author: Chris Sanchez

November 13, 2025

Survivorship and Song: John Rediscovers Joy After a Rare Salivary Gland Cancer

On most days, John thinks of himself first as a professional opera singer. He is a man who measures time in rehearsals, warm-ups, and the joy of the musical world he lives in. So when a small bump near his jaw appeared during a season of renewed health, it barely registered as a concern. No one, including his doctor, was envisioning a rare salivary gland cancer. His doctor scheduled a surgery and routine biopsy to clear it up. But a few days after the procedure, John’s world shifted when he heard the news he never imagined would follow something so ordinary. “It’s cancerous.”

Interviewed by: Carly Knowlton
Edited by: Chris Sanchez & Jeff Forslund

That moment touched off an unexpected and disorienting period. John, who had survived a heart attack and prided himself on resilience, suddenly found himself in the world of rare cancers. More testing and consultation with a specialized care team confirmed the diagnosis: salivary gland cancer (carcinoma ex pleomorphic adenoma), a type of head and neck cancer where cells in a long-standing benign tumor convert to cancer. The surgical team’s quick response led to neck surgery to detect if lymph nodes were cancerous, with the fortunate news that the cancer hadn’t reached his lymph nodes. “They wanted to act fast because it’s a high-density cancer, which can sometimes metastasize and be difficult to treat,” John recalls.

Radiation treatment was intense, requiring 33 daily sessions. The realities of daily therapy, loss of taste and smell, and the psychological barriers of eating purely for survival changed John’s daily habits and challenged his sense of well-being. Still, his career as an opera singer and choral performer went uninterrupted, a testament to John’s determination and vocal discipline.

Throughout his salivary gland cancer experience, John leaned heavily on his boyfriend, friends, and his wider musical community. He highlights Gilda’s Club and other support organizations as critical for emotional and practical help, especially for men. More than anything, John’s story emphasizes honoring support, resilience, and the importance of living as a “survivor of life, not just cancer.” He reminds all patients: “Cancer is cancer, no matter the type or how ‘mild’ it may seem. Surviving is surviving.”

Watch John’s video and browse his edited interview transcript below for more about how:

Advocacy and specialized care are vital for rare cancers like salivary gland cancer, making it vital to seek multiple opinions
Support systems, both personal (family, friends, partners) and professional (support groups), make a profound difference
Every type of cancer is significant; “easy cancer” or “mild cancer” is a dangerous myth
Maintaining identity and routine during cancer treatment can aid emotional healing and mental well-being
John transformed from initial shock to embracing survivorship and planning a life of early retirement, travel, and continued musical achievement

Name: John C.
Diagnosis:
- Salivary Gland Cancer (Carcinoma Ex Pleomorphic Adenoma)
Age at Diagnosis:
- 61
Symptoms:
- Rapid weight loss
- Small lump under ear that became more pronounced and grew larger
Treatments:
- Surgery: lumpectomy
- Radiation therapy

John C. carcinoma ex pleomorphic adenoma

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Transcript of John’s Interview

My name is John
The subtle lump under my jaw
How we confirmed my salivary gland cancer [carcinoma ex pleomorphic adenoma] diagnosis
How my diagnosis impacted me
My treatment plan
My radiation therapy regimen and side effects
I rang the radiation bell
The hardest part: loss of taste and smell
I have a strong support system: my friends, community, and partner
No evidence of disease: scan results and confidence
What I want others to know

My name is John

I was diagnosed in June 2025 with a rare cancer called carcinoma ex pleomorphic adenoma.

What I do for a living is where I find my joy. I am an opera singer, so anything voice-related brings me a lot of joy and passion. I have a social media presence where I talk about opera. I go to work and sing opera, come home, listen to opera, and talk about opera.

It’s what I do, I’m the opera man.

The subtle lump under my jaw

I didn’t initially know anything was off. I had a little lump under my neck for a couple of years. When I had a cold, I could feel it get a little bigger, but then it would shrink. It was about the size of a pea.

Over the last year and a half, that little pea became a bit bigger and more pronounced. I had also lost 50 or 60 pounds on purpose over a couple of years, so my face shrank and the bump became more pronounced.

I found an ENT and went to the doctor. He biopsied it, saying, “It’s probably benign.” The biopsy showed it was a benign tumor, but that it should come out because sometimes they later cause problems. We scheduled surgery to remove it.

Three days later, he called to tell me it was cancerous.

How we confirmed my salivary gland cancer [carcinoma ex pleomorphic adenoma] diagnosis

The cancer was rare because this type, carcinoma ex pleomorphic adenoma, happens when a benign tumor’s cells convert to cancer. That’s the nature of this cancer: the conversion happens after benign removal.

At first, we didn’t know exactly what kind of cancer it was. More testing was needed to make a clear diagnosis.

My ENT recommended I see a cancer ENT doctor who specializes in head and neck cancer. We did a CT scan and a PET scan and waited for the tumor board to review my case. The board meets every Monday to discuss cases and choose the best procedures.

They decided the best course was a neck dissection to remove as many lymph nodes as possible and determine if the cancer had spread.

A few weeks later, I had the neck dissection. The doctor said there was no cancer in any of the lymph nodes they removed. That meant subsequent radiation could focus on one localized spot instead of a wide field.

The surgery was successful. There was no pain, just a small scar. Healing took a week or two.

They wanted to act fast because it’s a high-density cancer, which can sometimes metastasize and be difficult to treat.

How my diagnosis impacted me

I was shocked. I absolutely was not expecting it.

I remember I was on the phone in my room, and the doctor was talking to me, and all of a sudden I couldn’t hear him anymore. I was just lost in the word “cancer.”

My family is large, but the only person who ever went through any kind of cancer diagnosis was my grandfather, who had pancreatic cancer when I was seven. Up until then, my family had dealt with heart issues, cholesterol, diabetes… conditions I’m familiar with.

Fourteen years ago, I had a heart attack, and that set me on a healthy trajectory. Cancer wasn’t really on my radar.

My treatment plan

By July or early August, my doctor said the course was to start radiation once I’d healed from the neck dissection. He said head and neck cancers generally aren’t treated with chemotherapy, and thankfully, I didn’t need chemotherapy, just radiation.

The challenge was timing. My contract year at the opera starts in August, right when rehearsals and preparations for opening night begin. I sing at the opera house, a church, and a synagogue, which are busy during High Holy Days. I had to consider how radiation would affect my voice, energy, ability to work, and whether I should just go on disability. But I wanted to start as soon as possible and get treatment out of the way.

He told me I’d need 33 sessions over about six and a half weeks, Monday through Friday.

After a short vacation in mid-August, I returned and started radiation immediately, continuing through late September.

My radiation therapy regimen and side effects

For the first week or two, I felt almost nothing; my mouth was just a little dry.

The first symptom was tooth sensitivity on the treated side, making brushing difficult. Then, mouth sores developed, making eating and swallowing painful. That side of my face became very red and swollen. My ear turned bright red, with sores inside it. I still feel a sound back there, waiting for it to heal.

The most profound effect was losing taste and smell. By the third week, food tasted like metal or chemicals, and then I completely lost both senses. Even now, they haven’t returned.

Thankfully, radiation did not affect my ability to sing. I fulfilled all my contracts at the opera house, synagogue, and church through the holidays. Some days were tough thanks to fatigue, throat pain, and body aches, but my workplace was supportive and never pressured me to come in.

Radiation became my daily routine. Treatments were at 9:30 a.m. I walked the dog, drank coffee (which tasted like nothing), biked or drove to the hospital, then did my treatment; just six or seven minutes. I’d return and start my day.

Once, I got the stomach flu for nine days and missed one day, but even when busy with temple singing for Yom Kippur, I arranged treatment around my schedule to avoid missing a session.

I rang the radiation bell

During radiation, you wait with others having treatment and develop relationships. I saw others ring the bell and say goodbye; I looked forward to my turn.

Last week was my final treatment, and I rang the bell.

The hardest part: loss of taste and smell

The loss of taste has been the most difficult part. During COVID, I lost my ability to taste for a week and thought I’d lose my mind. Now, unable to eat normally, it changes everything psychologically. I eat bananas and plain bread daily; food is flavorless or tastes bad, with a metallic or “vacant warehouse” chemical kind of taste.

It has been difficult, but life has thrown me challenges before, like a heart attack, losing a partner, and a severe leg injury. Each challenge showed me my resilience and helped me change my mindset to focus on positivity and what brings joy.

Remembering my resilience gives me confidence that I’ll get through this, too.

I have a strong support system: my friends, community, and partner

I have an incredible support network. Dozens of friends are around to help, including through a meal train (despite my loss of taste), people praying, and offering to help.

My boyfriend has been by my side every day, always asking how to help and making sure I get nutrient-dense food. My biggest strength is having him there for me.

I don’t know how people do this alone.

No evidence of disease: scan results and confidence

Hearing “no evidence of disease” felt incredible. I worried about spread, but the PET scan and neck dissection showed no cancer in the lymph nodes. This gave me confidence moving forward. I knew what I was dealing with and could focus on healing and ringing that radiation bell.

Now, I’ll see my ENT for follow-up in a couple of weeks, with scans and exams every three months for the first year, then every six months.

What I want others to know

When I was diagnosed, I read extensively and found out I wouldn’t need chemotherapy, and the cancer hadn’t spread. I thought I had an “easy cancer,” but that mindset diminishes the disease. Cancer is cancer, no matter the type or how “mild” it may seem. Surviving is surviving.

Nutrition during radiation is different. I eat healthy generally, but during treatment, you eat for medicine, not pleasure. When taste is gone, I eat for healing: protein drinks, soft and bland foods, and whatever my body can tolerate.

With each challenge, I ask what I’ve learned and how to look forward, not back. This experience motivates me to live a healthy lifestyle and plan for an early retirement, to enjoy life while still healthy.

Survivorship means continuing the life I’ve built and shaping my future; travel, new environments, and embracing change. I want to live as a survivor of life, not just cancer.

Being intimate and addressing changes in libido are part of healing, too. Finding someone understanding to talk to is crucial for physical and mental health. Gilda’s Club in Chicago is a great resource, providing emotional, physical, and financial support, nutrition and relationship classes, and more. Men and anyone with cancer should find organizations offering emotional and social support.

Thank you for sharing your story, John!

Inspired by John's story?

Share your story, too!

“Hope Always” — Hunter’s Inspiring Rare Desmoplastic Small Round Cell Tumors Story

Post author By Chris Sanchez
Post date November 9, 2025
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November 9, 2025

“Hope Always” — Hunter’s Inspiring Rare Desmoplastic Small Round Cell Tumors Story

When he was 21, Hunter balanced the roles of a full-time 911 dispatcher, a son and friend, and a gamer. But he was about to experience a rare and intimidating diagnosis, desmoplastic small round cell tumors (DSRCT).

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

When symptoms first appeared in late 2023, including sharp abdominal pain, nausea, and vomiting, Hunter initially brushed them off. But within days, an ER visit revealed abdominal and pelvic masses. That led to a biopsy at the University of Kansas Cancer Center, where he finally heard the frightening and alien words “desmoplastic small round cell tumors.” The internet offered its usual blunt statistics, but instead of letting fear take over, he chose to focus on the possibilities of treatment and the hope that lies beyond numbers.

Throughout the experience, identity became an anchor. Being a dispatcher and caring for others had always been central to Hunter’s life. Transitioning from caregiver to patient was jarring, but it also opened a new perspective. Now, he sees the subtle emotional weight that patients carry; it’s something that goes far beyond medical charts. That awareness doesn’t erase the difficulty, but it deepens empathy for others.

Hunter’s treatment path for this rare cancer was intense: multiple surgeries, rigorous chemotherapy cycles, a clinical trial in New York, and both traditional and radioimmunotherapy radiation. Every phase came with its own hurdles, from relentless nausea and hair loss to the emotional strain of living life in hospital rhythms. He leaned on surprising comforts, including peppermints that successfully warded off nausea, and the unwavering support of family, friends, colleagues, and a community that consistently stepped up.

Survivorship, for Hunter, isn’t just about returning to “normal.” It’s about discovering purpose. Feeling supported inspired a commitment to give support in return. Online DSRCT groups offered connection and a simple but powerful phrase: “Hope always.” That reminder became a guiding principle on days when his energy was low or uncertainty high. Hope wasn’t at all passive; it was active, a choice to find positivity even within the hardest moments.

Self-advocacy also emerged as essential. Hunter’s experience navigating referrals, accessing clinical trials, and learning to speak up within the healthcare system reinforced one vital truth: patients deserve to be heard. He encourages others to share their stories, ask questions, and build visibility around rare cancers like desmoplastic small round cell tumors. Open conversations create stronger communities and remind those going through it that they are not alone.

Watch Hunter’s video and read the interview transcript below. You’ll see how:

A dispatcher’s life flipped from caregiver to rare cancer patient overnight
Peppermints became Hunter’s secret weapon against relentless chemo nausea
A clinical trial in New York offered new hope
“Hope always” became Hunter’s guiding mantra through fear and fatigue
Hunter now champions survivorship and the power of patient voices

Name: Hunter D.
Age at Diagnosis:
- 21
Diagnosis:
- Desmoplastic Small Round Cell Tumors (DSRCT)
Symptoms:
- Abdominal pain
- Nausea
- Vomiting
- Fatigue
Treatments:
- Surgeries: debulking surgeries
- Chemotherapy
- Radiation therapy: radioimmunotherapy, under a clinical trial

Hunter D. desmoplastic small round cell tumors

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Transcript of Hunter’s Interview

My name is Hunter
My symptoms came on suddenly
The moment everything changed
My treatment plan
I took part in a clinical trial
The plan moving forward
The side effects I experienced during treatment
The biggest challenge I faced
What survivorship means to me
What I want others to know

My name is Hunter

I’m 23 years old. I was diagnosed with desmoplastic small round cell tumor, or DSRCT.

My hobbies mainly consist of playing video games with friends and spending as much time as possible with family and friends. I work a lot, but I do love my job.

I work as a full-time 911 dispatcher and currently serve as a supervisor. I’ve been a dispatcher for the last five years. I grew up in emergency services with both my parents doing it.

It’s definitely been an interesting transition, going from a caregiver side to the patient side of things. You know, I’m used to seeing and talking to patients every day as part of my job and hearing what they have to go through, but going through it myself has given me a whole new perspective — seeing how it is to be a patient, and living through some of their daily struggles.

I got diagnosed when I was 21. I’m sure everybody can think of what every 21-year-old would rather be doing than fighting cancer. But I’ve tried not to really look at it as getting robbed of my early 20s. I’d rather see it as having been taught how to live a better life, so that I can live the rest of my life the best way that I can.

My symptoms came on suddenly

It really only took one or two days of not feeling right to finally decide to go to the emergency room and get checked out. And it all really started around November 2023.

We had just come back from a festival a couple of towns over. The next day, I started feeling some pretty sharp abdominal pains, which wasn’t normal, but I just thought it was a stomach bug and I could sleep it off, and it wouldn’t be anything. But the next day, the pains got worse, and I started to have nausea and was vomiting as well. And as that worsened and went on through the day, I ultimately decided that night that it was time to go to the ER and get checked out. And during that visit, we discovered that I had a rather large mass growing in my abdomen and a smaller mass in my pelvis.

The people at the ER didn’t have an exact answer for what they were looking at because they weren’t sure at the time. So we were referred to the University of Kansas, or KU Cancer Center, for a biopsy and further diagnosis. And we actually had to self-refer ourselves because there were no local hospitals taking incoming patients at the time. So we had to take steps outside of the emergency room to take the next step in my treatment plan.

The moment everything changed

We visited the doctors at KU and got a biopsy scheduled. And from that point, we were trying to put the next steps in place. It wasn’t until we got the biopsy done and I had a port placed in my left shoulder that we found out that I actually had a desmoplastic small round cell tumor, a rare type of cancer. And then I was referred to the specialist that they have at KU.

Getting my diagnosis — there are actually two parts to that story. The first had to do with the initial findings in the ER when they had to come in and break the news that I had my tumor. My mom, who has been a nurse for years and years and has seen everything, was a little bit of an emotional wreck. And my knee-jerk reaction in that situation was to try and make things funny. So I was trying to make jokes out of the situation. While it was a rather serious topic at the time, I was doing my best to make light of the situation and keep a positive outlook.

The second part came two weeks later, a week after my biopsy, when we received the official results. I was with my best friend at the time, and we were in my basement when I got the call from my doctor. And we rushed up to my mom to see what the news was, because at this point, we were thinking it was a more controllable cancer, such as a testicular cancer or a lymphoma. But I was told that I had what’s called a desmoplastic small round cell tumor and that I have an Ewing sarcoma genetic trait to it as well. So it was a little difficult finding out that I had such a rare disease. And of course, we didn’t know anything about it at that point. We had never heard of it before; most people haven’t.

The more that we were researching this, the more worrisome it became, because Google will be pretty straightforward and will give you some sad statistics, but luckily, that doesn’t seem to be the case with most cases these days.

My treatment plan

We knew pretty early on that no matter what it was, we were going to be hitting it pretty hard with chemo. So I had a port placed within about a week of getting out of the ER, just as a precaution, in case we needed it. And it turns out that we did end up needing it.

It wasn’t long after my diagnosis that my doctor at KU was on the phone with me, talking about the treatment cycles that I was going to be on. He didn’t give me a lot of options, but that’s just because there weren’t a lot of options to effectively fight this. So I was put on a pretty rigorous chemo cycle that did quite a bit of damage for a while, but I had switched around between a few different treatments and been in and out of the hospital for transfusions and IV antibiotics. I’d been admitted a multitude of times due to complications with chemo alone. And you know, I was putting my body through all of that, but I just had to keep thinking to myself during that time that there was an end to it and that there was a reason I was doing all of it.

So the overall treatment plan was to hit it early with chemo to hopefully shrink any tumors, and after that, to go in and remove those tumors surgically. And once those tumors were surgically removed and they could no longer see or detect any disease or scans, they were planning to going to do a whole abdominal radiation therapy as well as a clinical trial. And over the years, all of those treatments just added up and got me to where I am today.

But yeah, three different surgeries. The radio immunotherapy trial, a month of standard radiation or traditional radiation, and then chemo on top of all of that, and then finishing it off with maintenance chemo.

I took part in a clinical trial

The doctors say the most effective treatment plan for desmoplastic small round cell tumor is to hit it early on with surgery, followed by traditional radiation treatment. The main kind of surgery for this type of cancer is called a debulking surgery. And to my understanding, that’s where they go in and try and remove any physical mass that they had seen on scans that they can physically get hold of. And once those are removed, they try and target that area with a traditional type of radiation to kill any residual cells that were left over. And there are also many other trials offered for this type of cancer that patients have access to.

I may not remember everything, but to the best of my memory, the clinical trial that I took part in was a radioimmunotherapy trial offered by Dr. Slotkin’s team at Memorial Sloan-Kettering in New York City. Simply put, they surgically removed the masses from my abdomen and put a radioimmunotherapy fluid into my abdominal cavity to sit there and absorb over a few days. And that would hopefully mark the targeted cells for radiation to be killed later on during the traditional radiation process. So with the clinical trial, I also had my third and final exploratory surgery, where they went in and cleaned up any scar tissue or anything else left behind, and made sure I didn’t have anything else growing.

After the clinical trial, they followed up with a month of traditional radiation. So we were living out of the Ronald McDonald House in New York for about a month straight while I received radiation treatment.

The plan moving forward

My maintenance chemo was scheduled for about a year. We started around January of 2025, and I’ll hopefully be wrapping up around January 2026. I don’t know exactly how many treatments I’ve had, but I’ve had them pretty consistently every three weeks. So once or twice a month, I’ll go in for a week of chemo and then have two weeks off. So the cycles are definitely up there. I’ve stopped keeping track after so long, but hopefully I’ll be wrapping up soon.

We’re planning a final trip out at the first of the year, hopefully a remission trip, and ring the bell out there and have my remission start in New York, where my big medical journey started.

The side effects I experienced during treatment

The most significant side effects that I first experienced when starting chemo and having my other treatments were the nausea and vomiting. They were relentless. There wasn’t really anything I could do to stop them. There was no medication I could take. Nothing would help. Food smelled different. Food tasted different. The only thing that helped get my nausea under control was peppermints. Because peppermint oil is supposed to naturally help soothe the stomach and treat nausea. So everybody would chip in and help buy me peppermints whenever I was doing my chemo weeks because they knew that was the only thing that really helped keep me from getting sick.

I also experienced hair loss. Luckily, I’m growing my hair back now, but my first chemo was pretty quick to take the hair out of my head whenever I started it. I was rocking the bald look for a while. But I feel like I look a lot better with hair. Luckily, I’m able to grow some hair now that I’m on my maintenance chemo.

The biggest challenge I faced

My biggest challenge is probably trying to feel normal after getting through it all again, because I’ve spent so long in and out of the hospital, in and out of doctors’ appointments, getting tested. People are constantly asking how I’m doing. And that’s something I constantly have to be aware of — how am I doing, really? I actively have to be watching everything that’s going on with my body and paying attention to everything that my body’s telling me.

But I’ve learned to stop worrying about things so much, to take everything day by day, and not necessarily be so anxious about every little thing that’s going on. I’m getting back to the normal side of life.

So early on, it was made very clear to me that I wasn’t going to have any problems finding support in my community. People really stepped up. They took time to make sure that I was doing okay during my treatment weeks and to check on me and make sure I and my family had everything we needed. I was also very lucky that my friends were able to support me through it. I wouldn’t have been able to get through it all if it weren’t for how well my employer treated me during all of it, too. They allowed me to keep my job while I was sick and kept my seat warm for me for whenever I was ready to come back.

What survivorship means to me

For me, survivorship means finding a higher purpose. Something that I’m more meant to do. For me, that’s helping others. I’ve found a lot of comfort in doing that. Well, it’s something that I already found comfort in doing before I got sick. But my experience has really resolidified that. Survivorship for me means advocating for others, moving on, not staying silent, and finding a voice. Not only for myself, but for others who are going through things like this. Because it’s not always easy to find yourself while you’re going through it.

I’m actually in a couple of online support groups for DSRCT. And one of the things that they say is, “Hope always.” And that was something I had never really heard until I started interacting with that group of people. But “hope always” has now come to mean to me that no matter how grim things look, all you can really do at the end of the day is hope. Because if you don’t, who will? Somebody’s got to have a little bit of hope in such a situation. I’ve had my hopeless days, but I’ve never let hopelessness consume me. I’ve always tried to try and take away at least one positive out of any bad situation, to kind of give myself a different perspective.

What I want others to know

One message that I definitely want people to take away is how important it is to find your voice and be heard. Because I don’t think anybody should go through this silently. They should absolutely fight cancer; they should be kicking and screaming. Since that’s how cancer tries to take you down, that’s how you should try and take cancer down, too.

I think finding a voice and being able to tell your story as a survivor and a patient is important not only to help give hope to others but also to be visible to other people, as someone who’s gone through it and someone who understands what other people are going through. I just want a stronger community.

I don’t want it to be such a hard thing for people to talk about. I want people to be able to talk about it more openly. Because when we talk about it openly, we can start tackling it. I feel like a lot of the problems don’t get talked about enough.

Patient advocacy is one thing that’s really important for me. After having gone through our own struggles with the American healthcare system, I am definitely a strong believer in finding your voice and self-advocating for yourself as a patient. Because if you don’t, who will?

Thank you for sharing your story, Hunter!

Inspired by Hunter's story?

Share your story, too!

More Desmoplastic Small Round Cell Tumors (DSRCT) Stories

Hunter D., Desmoplastic Small Round Cell Tumors (DSRCT)

Symptoms: Abdominal pain, nausea, vomiting, fatigue

Treatments: Surgeries (debulking surgeries), chemotherapy, radiation therapy (radioimmunotherapy, under a clinical trial)
...

Gianna C., Desmoplastic Small Round Cell Tumors (DSRCT)

Initial Symptoms: Urinary tract infection (UTI), consistent pressure in stomach, stomach pains, passing out

Treatment: Chemotherapy, surgery
...

Hamish S., Desmoplastic Small Round Cell Tumors (DSRCT)

Symptoms: Persistent fatigue, nausea, weight loss, hard abdominal lump

Treatments: Interval-compressed chemotherapy, surgeries (cytoreductive surgery, peritonectomy, HIPEC, right hemicolectomy, low anterior resection)
...

Joe F., Desmoplastic Small Round Cell Tumors (DSRCT)

Symptoms: Mild abdominal pain, fatigue

Treatment: Surgery, chemotherapy, radiation
...

Tags clinical trials, Self-advocacy

Chemotherapy Immunotherapy Kidney Patient Stories Radiation Therapy Renal Cell Carcinoma Treatments

A Life Defined by Strength, Hope, and Community: Mia Hamant’s Stage 4 Kidney Cancer Story

Post author By Chris Sanchez
Post date November 8, 2025
No Comments on A Life Defined by Strength, Hope, and Community: Mia Hamant’s Stage 4 Kidney Cancer Story

In Loving Memory: Mia Hamant 2004-2025

November 8, 2025

A Life Defined by Strength, Hope, and Community: Mia Hamant’s Stage 4 Kidney Cancer Story

In memory of Mia Hamant, who passed away after battling stage 4 kidney cancer at age 21.

This interview with Mia Hamant was recorded on October 15, 2025, just three weeks before her passing. When we spoke, Mia was full of determination and hope. She wanted to share her experience to help others understand what it means to face a rare and aggressive cancer at such a young age.

In Loving Memory of Mia
(2004-2025)

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez & Jeff Forslund

Mia was a goalkeeper for the University of Washington women’s soccer team, a psychology major, a loyal friend, loving daughter, and a fighter who approached every challenge with courage and grace. As Mia’s disease progressed, she was planning for her next steps including rebuilding her strength and pursuing clinical trials.

We release this video in her memory, with deep gratitude to Mia and her family for allowing her story to be shared. We hope you’ll listen to her words as she meant them. Her message is one of honesty, strength, and love for life, even in the hardest moments.

A goalkeeper for the University of Washington, Mia described symptoms that first masked as stress and travel-related illness, until scans and pathology uncovered a rare, aggressive kind of kidney cancer, associated with a mutation in the SMARCB1 gene, that demanded urgent action. She made a personal choice to limit some of the cancer details she wanted to be told. Maintaining uncertainty, she says, preserved hope and kept her focused on the next step.

Treatment started immediately with inpatient chemotherapy. Over time, her plan included cycles of chemo, spot radiation for pain (including back radiation to relieve leg pain), and a trial of immunotherapy that worsened the disease; something Mia framed as the treatment’s effect and the cancer’s response. Side effects such as nausea, pain flares, and chemo‑induced enteritis requiring hospitalization shaped her daily life. Hair loss was more manageable emotionally, eased by support from family, friends, and her boyfriend.

What helped Mia most was community. The UW Women’s Soccer program, coaches, classmates, and even a local coffee stand rallied around her. They posted signs, organized and contributed to fundraisers, and insisted that she remained part of the team. This close community kept her feeling grounded. She centered herself with routine to help her feel normal. She celebrated her birthday and asked friends to share everyday “drama.”

She continued school online and was aiming to graduate this coming year. With placing her dream of joining the National Women’s Soccer League (NWSL) on hold, she was focused on rebuilding her body and had pursued a second‑opinion visit at MD Anderson to explore clinical trials for her rare cancer. The lesson she carries forward is to follow one’s own process with the care team, because each experience with cancer is deeply personal, and the right path is the one that fits the person, not the statistics.

Watch Mia’s video and read through the transcript of her interview below. You’ll learn more about:

The importance of following your own process: decide how much information you want and communicate that clearly to your care team
How treatment paths can shift; if a therapy worsens a disease like kidney cancer or side effects are overwhelming, teams can adjust plans
How community matters: teammates, friends, family, and local supporters can make daily life and treatment feel more manageable
Transformation: You’ll see how Mia moved from shock and uncertainty to agency, advocating for timelines, exploring second opinions, and redefining “normal”
There is no one “right” way to navigate a cancer experience; the best approach is the one aligned with your values and needs

Name: Mia H.
Age at Diagnosis:
- 21
Diagnosis:
- Kidney Cancer (SMARCB1-Deficient Renal Cell Carcinoma, Non-Sickle Cell Trait)
Staging:
- Stage 4
Mutation:
- SMARCB1
Symptoms:
- Bad cough
- Fatigue
- Nausea
Treatments:
- Chemotherapy
- Radiation
- Immunotherapy

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Transcript of Mia’s Interview

My name is Mia
My soccer career and athletic background
The first signs that something wasn't right
My path to my kidney cancer diagnosis
Getting the official diagnosis
Learning about my stage and prognosis
Determining my treatment plan
Getting a second opinion
My treatment journey
Managing side effects
Dealing with hair loss
My current treatment plan
Managing my diagnosis while being young
Balancing school and treatment
Finding support during treatment
Finding normalcy as a 21-year-old
What hope means to me moving forward
What I feel I've been robbed of
My message to others

Editor Note: This interview with Mia Hamant was recorded on October 15, 2025, just three weeks before her passing.

My name is Mia

I have stage four kidney cancer, specifically SMARCB1-deficient renal cell carcinoma. I got diagnosed in 2025.

I am a senior now at the University of Washington. I have been on the women’s soccer team for all four years. In my first year, I tore my ACL, so I redshirted. But aside from that, it’s been pretty smooth sailing, except for this cancer diagnosis, of course.

I’m a psychology major, and I want to be a therapist after college.

My soccer career and athletic background

I’m a goalkeeper, which a lot of people think is the craziest thing ever. But I really love it. I started playing when I was around three years old, just doing little camps and whatnot, just getting touches on the ball. I also played basketball, softball, and volleyball growing up, which all helped me become the soccer player I am today.

I started with a 50% scholarship, and then I increased my scholarship. After playing last year and performing well, my coach upped my scholarship to a full ride.

The first signs that something wasn’t right

Things didn’t feel right for a pretty long time, honestly. I started feeling a little ill at the end of last year, so I would say at around November or so, things started heading downhill, but that was during soccer season. So I chalked it up to stress, because we were traveling so much around the country, and there was just a lot going on.

But the first symptom I realized I had was intense lethargy. So I was super tired, and my workouts just weren’t doing well. Usually, I could pump myself up, get myself going. But it wasn’t like that at all. So I was pretty tired. And then my breathing started getting pretty bad. So I was really short of breath. I am short of breath right now, too, because there’s fluid getting in my lungs and whatnot.

At the end of March, we were on a team trip in Spain, which was super cool, a great experience. But I got really sick during that trip, and I was throwing up and stuff. And I was thinking, “This is not normal. This doesn’t feel right.” But I also thought it was due to the food, or the travel, or something.

I got back to the States at the beginning of April, and then that’s when I went to the ER for the first time because of shortness of breath in the morning. And then I was told that it could be one of three things: an autoimmune disease, an infection, or cancer. So that’s when I discovered that I could have cancer. And then a few days later, I was diagnosed.

My path to my kidney cancer diagnosis

I had every single scan in the book. I was just there with so many different doctors just coming in and out. I was just a medical anomaly.

I finally got admitted to the hospital after they ran a biopsy, which confirmed the diagnosis. They drained my lungs and got some samples from that, and also did a liver biopsy. This allowed them to diagnose me on April 11th when I was admitted to the hospital.

I honestly can’t even remember what happened at this point. There was just so much going on in that short time span. I think they just wanted to double-check and really get that biopsy going to make sure we knew the right diagnosis.

I think they were just seeing a bunch of lesions everywhere, all over my body, because I got diagnosed pretty late, so it was stage 4. So there’s just a bunch of lesions all over my body. And I’m pretty sure that’s what made them decide.

Getting the official diagnosis

We laugh about this now, but when I found out, I was alone. My mom was in the hospital with me, but she was taking a work phone call, and I wanted to figure out what my diagnosis was on my own. But the doctor came in, and I feel so bad for this guy. He has a daughter my age. And he had to break the news to me, and I just started bawling my eyes out. And then my mom comes in and goes, “Why would you tell her without me?” It was a whole scene. It wasn’t a huge deal, but it was just funny to look back at. We joke about it now.

I just remember I was so shocked. I just had no idea what that diagnosis came with. So I was just out of it for a while. But eventually I got my bearings, and I really just put my mind to it and thought, “Okay, this is actually happening.” But for the first part, I was super out of it and just bawling my eyes out.

I’ve got no family history of cancer at all. I’m missing a certain gene that allows me to fight this cancer.

Learning about my stage and prognosis

I actually didn’t know for the longest time that I was at stage 4, because I didn’t want to know any details about it, even how long I have to live or whatever. I hate knowing those details. So I actually kept it under wraps for a while, and I found out through my GoFundMe page once it was posted that I had stage 4 cancer.

It is an ignorance-is-bliss type of situation, and I really appreciate the way that the doctors and I went about it, because I think it made my process a lot easier and more manageable for me to comprehend.

Determining my treatment plan

Honestly, that was a blur, too. But I think we immediately decided to start chemo because of the state of my body. It was hard for me to breathe, hard for me to move, to do all these things. So we immediately decided to start treatment no matter what.

I wanted to get some cold caps and stuff for hair loss, but there was just no time for that. There’s a bunch of other things with fertility and stuff that I was hoping to get done, but I couldn’t wait any longer for that either. So it was a whirlwind.

I did end up getting my first treatment of chemo in the hospital when I was admitted. So the doctors did a really good job of just getting that started and getting the ball rolling. There are definitely other ways I feel I could have gone about it, but timing-wise, it was very difficult.

Getting a second opinion

We did not initially get one, I just went with the original recommendation. We did get a second opinion recently in Houston, Texas, at MD Anderson. After that visit, I found there are clinical trials I could possibly join. My disease is rare, so we want to look at all options.

My treatment journey

I’ve done a bunch of treatments so far.

I started with chemo. I did three rounds of chemo. My schedule, my regimen, is every three weeks. I go in once every week, and then I have the fourth week off. So it’s a four-week cycle. I think I did that 2 or 3 times.

We tried to get off of chemo to try immunotherapy, but that didn’t work for me at all. My body did not respond to that very well, and I started getting pain flare-ups and all this other stuff. The immunotherapy actually made my cancer worse. That was a little bit of a setback. So we went back to chemo.

I’ve also been doing radiation to treat spot areas for pain, on my back, to help with pain in my legs. And what I’ve learned is that everything’s connected in your body, obviously.I had my first radiation session around the 5th of July. And then I’ve gotten radiation three times total. That was the first time, and then two times recently. But I’m still just doing chemo. I did take a little break, but now we’re back up to the cycle again.

Managing side effects

I’ve had tons of side effects, especially right now. I can’t even list them all.

Nausea is a big one. It makes it really hard for me to eat. What I recommend for that one is just whatever sounds good, just get it and eat it. That’s all I’ve been doing recently. DoorDash has been my best friend.

Then I’ve had pain flare-ups. I had a really bad one last night that comes along with radiation, which is super unfortunate because you can’t really do anything about it. My left leg was just in so much pain last night, and I just had to tough it out.

I had to be hospitalized for chemo-induced enteritis, which is inflammation of the small intestine. So I was just in so much pain that I had to get an ambulance. It was crazy.

Dealing with hair loss

When I first shaved my head, I was totally fine. I actually had to shave my head the other day again, because hair was falling out again because of chemo. But when I first shaved it, my family, one of my best friends, and my boyfriend were there with me. So it made it very easy to just get in the flow and just have fun with it, which I really appreciated because that could be a very emotional process.

But for me, I thought it was just a sign, just taking the next step now. “Now I’m a real cancer patient.” That’s literally how I felt.

Honestly, hair loss hasn’t really bothered me at all. I was told I have a good head shape, so that also helps. But yeah, it’s not really a big deal for me.

My current treatment plan

Well, we’re stopping radiation now because I just did another cycle. So last week was really tough because I did radiation and chemo, which I haven’t done before, combined therapies. So that was really, really tough on my body. And just the eating was very difficult, and the nausea was really awful. But now we’re just doing chemo from now on.

As I mentioned, I went to MD Anderson, and they have clinical trials that I could potentially try. I’m not sure about the exact details, but we’re working on those, especially since my disease is so rare that we really want to see all the options we possibly can.

Managing my diagnosis while being young

Definitely taking a break from soccer. I still try to make all the events. I try to make every single soccer game that I can for U-Dub because I want to be there for my team, and because my team’s always here for me.

That’s the saddest part, honestly, not being able to play with my best friends. Last year, I would say was my breakout season. So I was able to get a lot of playing time then and just really prove to not only my coaches, but to myself and my teammates that I do have what it takes to play at that level. And I did want to go pro eventually, but that has been stopped. That has been put on hold. So yeah, it is weighing on me a little bit, but the fact that I’m still able to be such a part of the team has truly helped a lot. My team has done so much, my coaches have done so much to make me feel involved, so it really takes the burden off of that in that regard.

I think that’s honestly a blessing about being so young with this diagnosis, just being surrounded by that community, because in two years, I wouldn’t be able to be surrounded by my best friends, fighting this together, because we’d be all over America or something.

Being this young and having that automatic group of best friends has been really, really helpful. And I live with my college friends too. So just seeing them daily, even if I’m not doing well, it’s just really nice to just have that outlet.

Balancing school and treatment

I’m doing fully online school. I tried to go in person for a little bit, but that did not work out very well. So yeah, we’re all online now.

Hopefully, I’ll graduate in the spring. I just have to take one statistics class in person that I’m really stressing about. But aside from that, yes, I am on track because we were able to do some classes before I got diagnosed. So I’m ahead of the curve, which is great.

Finding support during treatment

Just my normal resources. I see a therapist. I go to acupuncture, which is a lot more therapeutic than you would think, because my acupuncturist also dealt with cancer in her past. So that has been really helpful.

Friends and family have been amazing. Nothing short of incredible. I pride myself on the community I surround myself with. Having that solid base already has really helped me propel through this diagnosis.

The drink that I was posting about is from a little coffee stand called Muddy Waters. I’ve just been going to them forever, but they actually put up posters for me and stuff without me even asking, which is super nice. It had my GoFundMe page linked and stuff, and I know the baristas by name; they’re the best. It was super sweet that they were able to do that for me.

I just want to give a shout-out to UW Athletics. Just for all the support they’ve shown me throughout this whole thing. Not just my team, but all the other sports teams. There are some sports teams, like softball, that are the first to wear the orange ribbons for me or post about me, or shout me out. So, just really appreciate all that Huskie athletics has done for me.

Finding normalcy as a 21-year-old

The most normal thing I’ve done recently was celebrate my 21st birthday, which was super fun, on July 30th. I was able to go out and have my first drink and everything, so that was really great. I went out with my friends and family, which is not every 21-year-old’s dream, but I really enjoyed it.

I’d also say having my boyfriend just as a rock for me has been incredible. He treats me normally. Really cares and asks, “How do you want me to go about this?” Because they could baby you or they could act distant. But being able to be adaptive with him has been really great. And then my friends are just so amazing. They treat me normally as well. I just want to know the details. I want to know the drama. Don’t keep anything from me. Just treat me like a normal person. So that’s been the biggest thing. That’s been really great.

What hope means to me moving forward

I think that hope for me came from not knowing all the details of my diagnosis and whatnot, because it gives me hope that all the awful things on the internet aren’t real. Hope for me is just getting back to my normal life and living like a normal person. That’s all I could ask for, honestly. Just back to normal life. And I know life will never be normal again. But just having that hope that things will be normal again one day.

I have no plan as of now. Just trying to make sure my body heals. I really want to build my body back up. That’s a huge thing that I want to work on, because I’ve lost a lot of weight and a lot of muscle, and my body is something that has propelled me through the past four years of sports and school and everything. So that’s the number one priority for me. Along with my education. Not sure what the next steps for that is, but as I said, I want to be a therapist, so just wherever that takes me. Internships, other opportunities like that, just whatever I can get, honestly.

What I feel I’ve been robbed of

I feel I’ve been robbed of my whole soccer season. And just my body being at its peak. Every 21-year-old girl, this is your prime, almost. Your 20s are when you have the best physique, the best body. Hopefully. Ideally. So just not being the most confident in my skin has really sucked. So I feel I’ve been robbed in that way because my body is just fighting the cancer. It can’t do as much for me as it did before. So just not being able to work out has really sucked. And just not being able to move my body the way I want to has been a really hard part for me.

My message to others

I always say this. Follow your own process. As I said before, I did not want to know my diagnosis. But some people really want to know it, while others, like me, don’t. So just communicate with your medical team and figure out what is best for you, not what is best for everyone else. Because everyone copes differently, and it’s scary stuff. It’s not fun. So yeah, just follow the way that you want to go about things and just really stick up for yourself.

Kim’s Experience with Stage 4 Clear Cell Ovarian Cancer

Post author By Chris Sanchez
Post date November 8, 2025
No Comments on Kim’s Experience with Stage 4 Clear Cell Ovarian Cancer

November 8, 2025

Doubling Down on Hope: Kim’s Experience with Stage 4 Clear Cell Ovarian Cancer

Kim’s experience with ovarian cancer demonstrates the complexity and unpredictability of this diagnosis. She was previously diagnosed with stage 2 clear cell ovarian cancer, the least common ovarian cancer subtype, and it has now progressed to stage 4. She describes not only the physical challenges presented by the disease, but also the emotional and personal hurdles navigated alongside her family and care team. From her initial diagnosis to multiple recurrences and rare skin involvement, her story highlights the importance of early detection, clear communication, and a strong support system.

Interviewed by: Keshia Rice
Edited by: Chris Sanchez

After initial treatment and periods of remission, Kim faced several recurrences, with the ovarian cancer spreading to lymph nodes in her groin, lungs, and near her heart. One of the most striking aspects of Kim’s clear cell ovarian cancer case is its manifestation on the skin, a presentation affecting less than 1% of patients. Navigating her treatment path, Kim and her care team carefully weighed the risks and benefits of continuing chemotherapy, ultimately deciding to pursue a clinical trial, seeking both effectiveness and a better quality of life.

Throughout her experience, Kim has leaned on her wife, parents, and extended community. The emotional impact of her diagnosis and recurrences was matched by practical concerns around managing side effects, family conversations, financial matters, and the uncertainties of clinical trials. Kim candidly discusses the challenge of shifting from caregiver to receiving support, particularly as a woman often focused on taking care of others.

Kim’s story is a testament to the resilience of patients facing clear cell ovarian cancer. By sharing her daily struggles, moments of hope, and personal reflections, Kim encourages fellow patients and their families to seek support, stay connected, and remain open to the possibility of brighter days.

Watch Kim’s video and read her story below to learn more about how:

Quality of life considerations are central when making treatment decisions, especially after multiple recurrences
Support systems, both family and medical teams, play a vital role in sustaining a person through each stage of the cancer experience
Every patient’s experience is unique, and openness to clinical trials may lead to expanded options and new hope
Patients are not alone. Seeking help and sharing their experiences can foster connection and resilience
Kim moved from being a caregiver for others to accepting care herself, demonstrating courage and grace in vulnerability

Name: Kim C.
Age at Diagnosis:
- 40
Diagnosis:
- Clear Cell Ovarian Cancer
Staging:
- Stage 4
Symptoms:
- Coughing
- Incontinence
- Severe bloating
- Nighttime pain
- Hard lump on right side
- Appearance of rash on chest
Treatments:
- Surgeries: radical hysterectomy, lymphadenectomy
- Chemotherapy
- Radiation therapy
- Immunotherapy
- Clinical trial

Thank you to AbbVie for supporting our patient education program. The Patient Story retains full editorial control over all content.

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.

Table of Contents

About Me
Discovering That My Cancer Had Recurred
Receiving Prognosis and New Treatment Recommendations
Deciding About Chemotherapy
Joining a Clinical Trial and Finding Hope
Self-Advocacy During Treatment
The Impact on My Family
- My Ovarian Cancer Story Continues Below
Program Highlight: A New Era in Platinum-Resistant Ovarian Cancer Treatment Options
The Importance of a Supportive Care Team
Platinum-Resistant Cancer and Treatment Options
Lessons I’ve Learned About Myself
My Message to Others Facing a Recurrence
Navigating Identity as a Woman and Caregiver
My Final Reflections: Staying Hopeful Through Hard Times

When you go through a storm, you’re not alone.
Kim C. – Ovarian cancer patient

About Me

Hi. My name is Kim, and I am from Arkansas.

I was previously diagnosed with stage 2 clear cell carcinoma of the ovary, and it is now stage 4.

Discovering That My Cancer Had Recurred

We have the CA-125 test, which is a diagnostic test, and that started to go up. I’ve had three or four recurrences so far. The last time, I had a PET scan; it revealed a cluster of lymph nodes in my inguinal area, which is my lower right groin. Those just appeared. I had just had surgery to remove one, and then more popped up. The PET scan also revealed that I now have two cancerous lymph nodes in my lung and one close to my heart.

Then something odd happened. This is clear cell carcinoma, known as the zebra or unicorn of all ovarian cancers. I developed a rash on my chest. I had radiation earlier this year along my chest and under my arms, so I thought the rash was from that. They did a biopsy, and I now have clear cell ovarian cancer on my skin, which is extremely rare. We looked it up; maybe 0.9% of all ovarian cancers present in the skin, which is very odd.

Receiving Prognosis and New Treatment Recommendations

So, this was two or three weeks ago. We found this out and went to the doctor. I knew what this meant. I knew this was not going to be a good doctor’s appointment.

My parents and my wife, Jennifer, went with me. The doctor, as professionally as she could, told us, “We’ve been on this cancer journey for four years now, which is two years longer than what we anticipated.” She said, “I could put you on chemo. It might work. You’ll probably feel sick. Your quality of life really isn’t going to improve. We might buy you a little bit of time. What I really suggest you do while you’re feeling ‘good’ is take this time off work. Go on long-term disability. Do all the fun things you’ve ever wanted to do while you feel good enough.”

I work for an amazing company with amazing benefits. That’s what I did. We are getting ready to do some fun things and have some special plans.

Deciding About Chemotherapy

When I heard the doctor say we could do chemo, she had tears in her eyes. She said, “I am worried.” I felt it. It was like an out-of-body experience.

I knew with this cancer, it wasn’t if this time would come, but when. We had come to terms with the idea that this would be treated more like an autoimmune disorder, where our goal was just to stay ahead with treatments. When she told me that the only other option was harsh chemo, it was numbing. I’m still processing it. It’s a scary feeling when a doctor tells you that. My family was there, and they kind of went through a similar experience, just, “holy cow.”

It’s a quality-of-life issue, because I’ve already had chemo in the past; one round of six cycles as frontline chemotherapy, then another six cycles more than a year later. Each time, it was really harsh on my body. I was hospitalized because my platelets and other counts crashed. I had blood transfusions. To put my body through that again might be even worse this next time.

You have to weigh it out: Is it worth it for just a little more time? Or do you want quality of life, great memories, and to do all the things you can?

The doctor also said that there was a medication, a pill that could target a certain gene mutation I have, but she didn’t have high confidence in it. She really wanted to get me into the clinical trial over chemo because chemo is just so tough on the body.

Joining a Clinical Trial and Finding Hope

In all this craziness, there is some good news. We found a clinical trial for me. I’m in the process of all the necessary testing to make sure I qualify for it, and that what they’re testing is likely to work. If everything goes well, I’ll start treatment in the clinical trial in less than a month.

We are really praying, hoping, and keeping our fingers crossed that everything will work with minimal side effects. Because chemo is really hard, and I don’t want similar side effects, but that’s where we are right now.

At first, I was thinking, “It’s a trial. The FDA is still working on it. It’s a science project.” And it is truly science; they need people to go through these trials to ensure that the medicine works. On one hand, I’m honored to help the future of women with this terrible disease, but on the other hand, I wonder what it will do to my body. Will I have side effects, or will I just buy a little more time?

With chemo, you go through six rounds, and by round four, you feel really bad, but you know, “I just have two more.” This clinical trial is indefinite: you can opt out if your body can’t handle it or your tumors aren’t shrinking, but the goal is to shrink the tumors. It’s kind of a gamble. You feel like you’re rolling the dice, but I’m feeling pretty lucky.

I have a strong faith in God, my family, and myself — we believe God brought us here. He opened up one spot in the clinical trial, and I was able to pursue it just in the nick of time.

I really feel like this is meant to happen.

You have to weigh it out: Is it worth it for just a little more time? Or do you want quality of life, great memories, and to do all the things you can?
Kim C. – Ovarian cancer patient

Self-Advocacy During Treatment

How I’ve advocated for myself: I have done some research, but I really have to give so much kudos to my wife, who has done a lot of it.

I feel like we’ve had doctors who are bulldogs about getting medicines approved. I’ve done immunotherapy in the past. Asking a lot of questions and noticing changes in my body is a big way I advocate; paying attention to all the little changes and bringing them up.

I have some brilliant doctors in whom I have complete trust, and they’ve truly done everything they can. They’re learning a lot, as this is new to them. I hope that for future generations, this will help the learning process.

The Impact on My Family

My wife has been an angel. It’s been very difficult for her. Everyone processes emotions differently; she processes them differently than I do. It’s been very, very hard. I’ve even said to her, “Wow, you did not sign up for this.”

Every day, I feel like I owe her an apology, but I know this isn’t something I caused. I can see how worried she is.

Jennifer, my family, my dad, stepmom, her family, and a huge community of friends; they’re all worried, but they are right there with me, encouraging me. Jennifer is right here, and anytime I have a tough moment, so is she. It’s been really hard.

My grandkids are eight, four, and a brand-new baby. We haven’t really talked about cancer with them. The eight-year-old was four during my first chemo rounds and saw me lose my hair. She calls me Mimi and said she didn’t like my hairstyle, which made me laugh. With our son, her dad, we’ve talked in depth, but we’re leaving it up to our kids to talk to their kids when they feel the time is right, using the right words.

We are here for questions, but as grandparents, we’re not in the position to explain cancer unless they ask. I’ll answer carefully, but they’re still young, so we haven’t had big discussions.

They sure have been a bright light to us. They visited a couple of weekends ago, right after we got bad news. Holding the newborn and playing with them lightened the load in my mind.

We have two sons, one is 21 and one is 31. They’re strong men, but handle it in different ways due to their personalities. The 31-year-old is a rock. I can talk with him in depth, and he shares things he’s heard about science. We brainstorm and discuss a lot. They want to know every detail, so we plan when and how to tell them. The 31-year-old lives six hours away with his family, and the 21-year-old lives with us. He’s been amazing. He gives random hugs and prayed with us last night. That made me feel good. As a family, this has been a growing experience.

We’re learning to lean on each other, that it’s okay to feel weak or to cry, ask questions, or worry — but most importantly, to be honest and truly lean on each other.

My Ovarian Cancer Story Continues Below

Program Highlight: A New Era in Platinum-Resistant Ovarian Cancer Treatment Options

Navigating a diagnosis of platinum-resistant ovarian cancer can feel overwhelming, but recent advancements and clinical trials are bringing new hope and more personalized treatment paths. This program offers empowering information on the latest therapies. We are joined by Dr. Kathleen Moore, an internationally recognized leader in gynecologic oncology from the Stephenson Cancer Center, who breaks down what you need to know about where treatment is heading.

Dr. Moore will help break down some of the more complex ideas regarding ovarian cancer treatment. Go beyond the words and hear from an oncologist who treats patients every day.

What to expect:

Understand Platinum Resistance: Learn what this diagnosis means and how it shapes your treatment options
Discover Emerging Therapies: Hear about the promise of antibody-drug conjugates (ADCs) and other new drugs that are improving survival
Learn About Biomarker Testing: Find out how tests for markers like folate receptor and BRCA can unlock personalized treatment paths
Explore Clinical Trials: Get clear answers about how to find and access clinical trials for new and promising ovarian cancer treatments
Personalize Your Care: Learn how oncologists are sequencing therapies to create more effective, individualized treatment plans
Advocate for Yourself: Gain insights on communicating with your doctor and the questions to ask to ensure you get the best care

Dr. Kathleen Moore: The next big challenge for us is going to be… say these [new treatment options] are all approved. Which one do I get first? Does it matter?… It’s really going to be the next big challenge for us — individualizing for our patient so they get the best drug for them, best tolerated.”

Making sure patients feel seen and heard

Dr. Moore: “Patients present with months and sometimes even longer, of just not being believed or being bounced around or given this or that medicine, So they arrive at our door with some varying state of trauma that I don’t know that we’ve ever really addressed up front. But I’m trying to start acknowledging that at least.”

Dispelling myths about clinical trials

Dr. Moore: “People don’t want to feel like a guinea pig… They want to participate in clinical trials, and I want to run clinical trials that I think are going to work.”

Helping more patients get access to the latest therapies

Dr. Moore: “There are a lot of community sites doing very high-quality clinical research. Trying to figure out where that is in your community can be the first step… Getting access to these sorts of medications as compared to Topotecan — 100%, I would want that for my mom.”

For the rest of this interview, watch our program replay ON DEMAND.

Learn what’s changing, how it impacts treatment decisions, and what it all means for patients today.

Back to My Ovarian Cancer Story

The Importance of a Supportive Care Team

My care team has been amazing, led by my doctor and including the nurse practitioner. They’ve always been honest. Jennifer prefers to know, “If this doesn’t work, then what?” I just want to know, “Is this working?” We’ve each approached the doctors differently, but they have always wanted the best outcome. I truly believe our doctors want to cure cancer and want us to live. You have to believe in your medical staff, from the doctor to the nurse practitioner to the nurses in the infusion center where I get treatment.

Those nurses are so supportive. If I get bad news, they’re there. I remember having a rough day, and they gave me a blanket inscribed with words; one of them is “battle.” I call it my battle blanket. Each nurse in the infusion room came by, hugged me, and said a word of encouragement. We are all in this together as a team.

Now, I’ll be switching to the clinical trial team, which is a little scary. It feels like losing my security blanket with my current team, though I know the new team is excellent. My current oncology team will still get updates from me. It’s amazing to have this community and see all the helpers coming from everywhere. When you go through a storm, you’re not alone.

Platinum-Resistant Cancer and Treatment Options

There’s platinum resistance, which involves frontline chemotherapy medicine. To be platinum-resistant, you think, “Oh great, now no chemo is going to work,” but there are chemotherapies that aren’t platinum-based. Knowing you’re platinum-resistant cuts out a large portion of available therapies, which can be scary.

But I don’t focus on that. With clear cell, being platinum-resistant is so common. What worries me more is that this cancer is so rare; even doctors are still learning about it. Science and funding need to catch up so we can study and find more therapies, including more non-platinum options for all cancers. I hope I’m correct in my science, but basically, being platinum-resistant means we need more therapies.

Lessons I’ve Learned About Myself

I’ve always said I wanted a purpose in life, and I feel like showing love to others has always been my purpose. Cancer has given me an even greater sense of purpose. I now have a platform to inspire and bring hope to people. People ask me how I do it, where I find my strength. I believe God gives me the inner strength and the drive exactly when I need it, which He has proven again and again during this journey.

I’m now faced with real mortality, knowing that if things don’t go well, this could be it. It’s hard to process. But with my faith in my medical team and in God, and belief in this clinical trial, I’ve learned to stay calm. I don’t have control, anyway.

Take a deep breath, don’t panic, keep going, and do your best every day. It’s okay to not have a good day, and to let people know, so they know it’s okay for them, too. I’ve learned no matter the outcome, it’s going to be okay.

Take a deep breath, don’t panic, keep going, and do your best every day… I’ve learned no matter the outcome, it’s going to be okay.
Kim C. – Ovarian cancer patient

My Message to Others Facing a Recurrence

Yes, the cancer has come back. Everyone’s kind words, encouragement, and prayers mean so much. I’m not giving up, I’m not losing hope, and I’m going to keep pushing. I don’t want anyone to look at a recurrence and think, “Never mind.”

Just don’t lose hope. Keep hope with your medical team. Science will hopefully come up with the right therapies. The encouragement has meant so much; please keep encouraging, and encourage others who need it.

I don’t want people to lose hope that cancer can’t be cured, or that miracles don’t happen, because I believe in miracles, and I want others to believe too. The encouragement keeps me going. We’re going to keep fighting.

Navigating Identity as a Woman and Caregiver

To keep showing up for others, despite what I’m going through mentally, has really helped me. I love to make people laugh and bring a smile. It keeps me going.

Being in a position where I’m the one needing care is difficult because I’m used to caring for others, and I love to help. But now, I need help. It’s an odd feeling. It’s hard to ask for help, but often people just show up intuitively.

I’ve stayed in a community surrounded by friends and family. My wife is amazing. To have her care for me in such a different way than you would expect as a spouse is hard, but I want to continue to show up for her and my family as much as I can. Being able to still do that makes me feel good.

My Final Reflections: Staying Hopeful Through Hard Times

Even though this cancer has recurred again, and this is a really tough recurrence, I want people to know that even in the toughest times, like what I’m dealing with right now, you can’t really know exactly what someone else feels.

But even in your darkest times, open your eyes, look around, and find your people. Find your helpers. Find encouragement. Try your best to find someone to talk to, vent to, or encourage. Just don’t give up in your toughest time. Whatever you’re facing, cancer, trauma — don’t go down that dark hole mentally. Be mindful of your mind. If your thoughts are getting dark, find a way to turn it around; help someone, encourage someone, be there for someone, pick up the phone, call someone.

Find resources: support groups, communities. There really is a lot of help. Sometimes you just have to search for it. Stay hopeful, don’t give up, and don’t let yourself go down that dark hole mentally. Look for people to inspire. Take it on as a chance to do good for others, to be a light. I really believe that’s important for people to know.

… even in your darkest times, open your eyes, look around, and find your people… Just don’t give up in your toughest time.
Kim C. – Ovarian cancer patient

Special thanks again to AbbVie for its support of our independent patient education content. The Patient Story retains full editorial control.

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Seeing Beyond the Fear: Steven’s Fight Against Rare Eye (Lacrimal Gland) Cancer

Post author By Chris Sanchez
Post date November 7, 2025
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November 7, 2025

Seeing Beyond the Fear: Steven’s Fight Against Rare Eye (Lacrimal Gland) Cancer

When a small dark spot appeared in Steven’s vision in June 2024, it seemed like a minor eye issue. He saw an ophthalmologist, and went through the normal process to uncover what was going on in his eye. What he didn’t know was that the source lay in one of the smallest yet most vital structures of the eye—the lacrimal gland, responsible for producing tears. Further testing revealed something far more serious: a rare cancer called adenoid cystic carcinoma, originating from that tiny gland tucked above the outer corner of his eye.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Steven’s lacrimal gland cancer diagnosis unfolded gradually and culminated in surgery that revealed cancer rather than the expected benign cyst. While his initial shock was compounded by the rare and poorly documented nature of adenoid cystic carcinoma, Steven credits his support team, including his wife, children, and a neighbor oncologist, for helping him make sense of his treatment options. After consultations at MD Anderson and Mayo Clinic, he began an intensive six-week regimen of radiation and chemotherapy, chosen specifically for the cancer’s tendency to spread along nerves and resist standard treatments.

Throughout his treatment, Steven remained firmly committed to family life and self-advocacy. He emphasizes how critical his support team was in managing daily realities like side effects, exhaustion, and the ongoing fear associated with “scanxiety.” His story is marked by personal and professional transformation. When he completed treatment, he was relieved and proud and celebrated by ringing the clinic gong.

Steven now looks ahead to regular monitoring and a new chapter in oncology nursing, hoping his personal insight into adenoid cystic carcinoma will empower him to advocate more authentically for future patients. Ultimately, his lacrimal gland cancer experience highlights the power of hope, the importance of purposeful action, and the value of forming strong support networks.

Watch Steven’s video and read through the transcript of his interview further down to delve into:

How early self-advocacy can make a critical difference in rare cancer diagnosis and treatment
The importance of a strong support system in coping with both treatment and uncertainty
Steven’s transformation from patient to future oncology nurse, inspired by his own experience with lacrimal gland cancer
The distinct challenges of parenting during treatment, and how maintaining involvement and honesty with children fosters connection and healing
How being proactive and insisting on a thorough investigation led to timely and effective treatment for Steven

Name: Steven S.
Diagnosis:
- Lacrimal Gland Cancer (Adenoid Cystic Carcinoma of the Lacrimal Gland)
Age at Diagnosis:
- 36
Symptoms:
- Appearance of black spot in vision
- Drooping of affected eye
Treatments:
- Surgery: tumor excision
- Chemotherapy
- Radiation therapy

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Transcript of Steven’s Interview

My name is Steven
When I first noticed something was wrong
The day of surgery
The moment everything changed
Why I wanted to get multiple opinions
How I handled treatment
What the plan looks like moving forward
The most challenging part of my diagnosis
What hope means to me
My biggest advice to others

My name is Steven

I was diagnosed this past June 2025 with adenoid cystic carcinoma, coming from the lacrimal gland in the orbit of my eye.

When I first noticed something was wrong

It was June of 2024 when I started to notice a black spot in my peripheral vision. It was kind of like if you press on your eye, you can see a black spot on the opposite side. I thought, “That’s weird,” so I called an ophthalmologist.

I had never seen one before, so I just googled and found the closest one and went, and they ran tests in the office. They just said, “We don’t see anything.” I had actually, I don’t know, 10 or 12 years before, had had a tear duct surgery for a clogged tear duct, so they had to unclog that. I thought it was related to that.

I thought, “There’s got to be something in my eye,” because it wasn’t like black spots or floaters or anything like that. So I thought, “There’s got to be something in my eye,” and I just ignored it for the next year. The doctor just said, “We don’t see anything.” They told me that if it kept coming back, they would send me to a retinal specialist, but I just ignored it for the next year.

Then I had just graduated from nursing school. When I was in nursing school, they did this thing called your capstone, where you do ten shifts with the same nurse. I was in the operating room, and I sent a selfie to my wife. I noticed that my eye was lower, which scared me.

After I graduated, I put my symptoms into ChatGPT, and it said I should go in. So that day, it was a Sunday, I just went into the ER, and they did a CT scan and an MRI, and they found the tumor. They originally told me it would be just a benign cyst, and they referred me to an oculoplastic surgeon. He told me the same thing: “Yeah, it’s probably just a cyst.” But looking at the original MRI results, it actually said they couldn’t rule out ACC, but it’s less than 1% of cases that have that.

The day of surgery

When I had surgery, I was just expecting it to be simple. All the doctors said it was no big deal. My doctor said, “I’ve done this surgery hundreds of times. It’s usually a cyst filled with, like, hair and bone and stuff, and it’s really nasty.” He even told me he would give me a picture. So when I went in for surgery, I thought, “Yeah, this is no big deal, and I’ll be fine.”

But then I woke up, and the nurse practitioner who assisted in the surgery said, “We did find cancer. We’ll let you know more later.” They sent it for biopsy. That day, that was really all I knew. I didn’t know anything. I didn’t know what kind of cancer it was. I didn’t know anything.

In the days following, I read the surgical notes that are on the app, where I have access to all my medical records. They said it was invading bone, but they didn’t say what kind of cancer. I guess they couldn’t really until it came back from the biopsy, but until the doctor called me with those results, it was just a guessing game. I didn’t know anything about it.

The moment everything changed

When I first heard the diagnosis, I had never heard of this type of cancer, which is a very rare form of cancer. I’d never heard of it. I did as much research as I could. I’ve done a lot more since then, but that day I researched it and mostly found out that the most important thing for different survival rates is the growth pattern of the tumor. There are three different types. I found out later that mine is the middle one, which is the most common. There’s solid, which is the most invasive. Then there’s cribriform, which is what mine is, and then there’s tubular, which is the least invasive and has the best prognosis. But mine is the middle one.

Once I found out those results, after researching it, you scare yourself. You really do. They tell you there’s not much data on it, and you see all the life expectancies, and you just don’t know what to think. I didn’t know what to think, really.

Sharing with my wife, she has taken it harder than anyone, which I expected. She was at work, and I had to call her with the results. I didn’t want to wait, and she wouldn’t have wanted me to wait, so I just told her over the phone. She said, “I’m not looking up anything until I get home.”

Since then, we told our kids, they don’t really understand, so we just told them, “Dad has cancer,” and that’s about the extent of it. They’ve seen me do the treatments. My wife has shared videos that she’s taken and pictures of radiation and chemo and stuff like that.

Why I wanted to get multiple opinions

When I first found out, I actually had a neighbor who’s a medical oncologist, and I called him. He said, “I’ll look into this for you.”

My eye doctor, the surgeon who did the surgery, when he gave me the results, said, “I’m setting you up with radiation oncology and to get a PET scan done to see if it’s spread anywhere else.” My oncologist neighbor said there wasn’t much he could do because he works with chemo, and chemo doesn’t usually work with this kind of cancer. He said I would want to see a radiation oncologist, which I had already set up.

I saw the radiation oncologist first, and they said it would be 30 treatments, five days a week. They put this mask over your face so you’re in the same position every time, and they’re really accurate with where the radiation goes. Then my neighbor called me back and said he had talked to some colleagues at places like MD Anderson and the Mayo Clinic, and they said there is a type of chemo that you can try that has been shown to help in conjunction with radiation. So I opted to do that as well with him.

I also joined a Facebook page of people who have the same type of cancer. It was pretty straightforward. Everyone does the same kind of treatment. Surgery is the best first thing you do, and then radiation. It’s hard for them in surgery to get it all because it follows nerves. It’s in the lacrimal gland, the tear gland, and that’s right by your optic nerve and everything. So you have to do radiation to try to kill the rest. From there, we just have to do scans to see how successful it was.

How I handled treatment

With treatment, they say that kind of chemo I was on is one of the worst as far as nausea goes. I had nausea, but I never had any vomiting or anything like that. It was more like I’d feel it in my stomach, then I’d eat something, and the next day I’d think, “I can never eat that again.”

With radiation, there was severe exhaustion. I put Aquaphor around my eye because it started to get really red. They said you can have skin breakdown if you’re not on top of that. This chemo doesn’t really cause hair loss, but with the radiation, my eyebrows started falling out, and I had these weird patches of hair loss from the radiation as well. Other than that, I was able to stay pretty active, which for me is important.

I continued to work through most of the treatment. I took about two weeks off at the end because it got hard with how tired I was from the radiation and everything.

My wife was the real hero there because she also works, and she really took care of basically everything. The kids were just starting school, which, after they started school, was nice for me because they were gone and I could rest or whatever. Still, I wanted to be a part of their lives. I didn’t want to just check out, so I’d still do as much as I could.

Even doctors told me, “You can ignore that exhaustion as much as you want. You can do as much as you want as far as being active or being with your kids.” So we would still take them to the park or to the pool and all that stuff, just trying to keep it as normal as possible. But it was hard because I had all my appointments, and then my kids have appointments too, and balancing all of that is pretty tough. Our daughter with Down syndrome has a bunch of appointments. This year, she got diagnosed with sleep apnea, so we’ve had to see a cardiologist for her and then the sleep doctor as well. Balancing everything is pretty tough.

What the plan looks like moving forward

I finished treatment at the beginning of September. It felt good to be done. They have this big gong that you ring when you’re finished, and they let me keep my radiation mask.

It was just nice not to have to go in there every day and not feel that same level of exhaustion, even though that exhaustion is part of it, and treatment is important. Knowing that I’m done and that I can keep going with my life and everything I like to do feels really good. I can’t think of many words to describe it besides saying I was just glad to be done with it.

They said to wait about three months for the inflammation to go down, and then I’ll have scans. I’ll have another MRI and everything in November, at the end of November. With this kind of cancer, the tumors are slow-growing, but it’s very persistent, which is what they told me. So every three months, I’ll have scans for at least a year. After that, they go every six months or whatever the plan ends up being. If they find tumors elsewhere, hopefully they can surgically remove them. It’s very common for it to spread to the lungs, or it can spread to the liver and a bunch of different places, so they have to monitor everything really closely. Catching it early is the most important thing.

Everyone says there’s “scan fear,” and for sure that’s real. You want to see that they don’t see any signs, especially locally, but also that it hasn’t spread. They say keeping the cancer local is the most important thing. But if it’s still there, then treatment options are kind of limited. Some people have their whole eye removed or different things like that. There’s not much else they can do for that, unfortunately.

The most challenging part of my diagnosis

The biggest challenge is probably just seeing how everyone reacts to it. I know I can do the treatment. I feel like it’s scarier for everyone else, especially for my wife. Luckily, my kids don’t understand as well, so they haven’t had that fear.

For me, it’s hard to explain. I know what I have to do, but seeing how everyone else responds to it, even extended family — every time I see them now, that’s what they ask me about because everyone is worried. The only thing I can think of is that I want to do everything I can. That’s kind of why I opted in to do the chemo. I wanted to do everything I could, the most I could, so that I don’t have regrets later, wondering if maybe something could have worked and I didn’t do it.

What hope means to me

Hope is just knowing or believing that good things can happen. If I didn’t have hope, I would just give up. Why go through the treatment? It’s difficult. Why do it if you don’t have any hope of it working?

I would tell anyone to know that I believe everyone has a purpose, and with that purpose, you can help other people. My message is that if you’re going through a hard time, just keep going. Hopefully you have a strong support team. That’s been what has helped me the most. If you don’t, then find one, because other people can help you a lot.

I’ve had a ton of help from family. My sisters did bake sales to help raise funds, and obviously, my family here at home. I know that they love me and I love them, and that hope, the hope of continuing to be with them, is what has gotten me through most everything.

My biggest advice to others

In nursing school, one of the biggest things they tell you is to be an advocate for your patients. Be an advocate for your patients as a nurse. I would also say: be an advocate for yourself. If you feel like something’s not right, make sure that you are being heard.

There’s a chance that when I went to the ER, they wouldn’t have done an MRI and would have sent me home or told me to go see an ophthalmologist again. Make sure that you are getting the treatment and help you need, and that you’re not being ignored. Make sure the doctor you see isn’t just going through the motions, that the doctor hears you.

Just be an advocate for yourself and make sure that you’re heard when you’re going through something like this.

Thank you for sharing your story, Steven!

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Drea Finds Identity and Strength with Stage 4 ROS1+ Lung Cancer

Post author By Chris Sanchez
Post date November 5, 2025
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November 5, 2025

Drea Finds Identity and Strength with Stage 4 ROS1+ Lung Cancer

Drea is a video journalist who was only 26 when she was diagnosed with stage 4 ROS1+ lung cancer. It came as quite a shock. She never imagined that a physically active, young non-smoker who had never had any health issues, could ever get cancer.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Drea’s story began in early 2023. She began to experience some strange symptoms, including a swollen ankle from an unexplained deep vein thrombosis or blood clot, odd bruising, extreme weight loss, and persistent shortness of breath. She went to the ER several times, had some urgent care visits, and also saw specialists, but was reassured that what she was experiencing was due to stress or other such causes. She started to doubt herself even as her health began to deteriorate. Eventually, she succeeded in having a CT scan done. It revealed a large mass in her lung. Further tests confirmed that she had stage 4 non-small cell lung cancer that had already spread to multiple locations.

Drea’s experience has convinced her that self-advocacy is key. She explains why we always need to trust our instincts. “If you feel deep inside that something’s wrong, keep pushing,” she advises. Because she was persistent, she eventually had comprehensive biomarker testing, which identified the ROS1 mutation. This discovery opened the door to life-extending targeted therapies.

Living with stage 4 ROS1+ lung cancer has helped Drea redefine survivorship. It’s not just about existing; it’s about living fully. The targeted therapies she’s having allow her to enjoy climbing, biking, beach days, and gardening. She’s open and frank about her ups and downs, and acknowledges the chaos and struggle of having to navigate cancer in her 20s. But she’s decided to treat each day as an opportunity by focusing on what she can control rather than agonizing over the “what-ifs.”

Cancer didn’t strip Drea of her identity. Instead, it’s added new layers. She’s not just a video journalist anymore; she’s also an advocate, connector, and source of hope for others. She shares her story openly to help more people realize that “anyone with lungs can get lung cancer,” and, by doing so, to break the stigma that lung cancer is a smoker’s disease.

Drea urges others to be their own best advocate, seek second opinions, push for biomarker testing, link up with patient groups for support, and, most importantly, give themselves grace. Watch her video for more on:

Her diagnosis at such a young age and how she became her own health advocate against all odds
Drea’s struggle to be heard before her stage 4 ROS1+ lung cancer diagnosis
How targeted therapies gave her her life back
Why Drea names her cancer ‘Carl’, and how humor helps her thrive
The advice she offers young people who don’t feel heard by doctors

Scroll down for the transcript of Drea’s video interview!

Name: Drea C.
Age at Diagnosis:
- 26
Diagnosis:
- Non-Small Cell Lung Cancer
Stage:
- Stage 4
Mutation:
- ROS1
Symptoms:
- Swollen ankle resulting from a deep vein thrombosis or blood clot
- Mysterious bruising
- Extreme weight loss
- Persistent shortness of breath
- Rattling sound coming from the throat while breathing
Treatments:
- Radiation therapy
- Chemotherapy
- Targeted therapies

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Transcript of Drea’s Interview

I'm Drea
When I first felt something was wrong
The moment everything changed
I took my health into my own hands
Learning my biomarker
My treatment plan
How I feel about clinical trials
How I’m navigating my diagnosis and being young
“Hope” is a complicated word for me
What I want others to know

I’m Drea

My name is Drea. I was diagnosed with stage 4 non-small cell lung cancer at 26.

When I first felt something was wrong

I first started feeling off at the beginning of 2023. It began with the DVT, which is a blood clot that resulted in a swollen ankle, and at the time, it didn’t make sense to me because there were no known injuries; I hadn’t fallen, I didn’t trip or anything. I had gone to urgent care, which then sent me to the ER, and then they discovered that it was for sure a blood clot, so they put me on thinners. Following that, I kept having these sorts of mysterious symptoms, among them just bruising up and down my body, and extreme weight loss. It felt like I was in a pit of despair. I felt like there was something off, and I don’t know how to describe that feeling. And I think throughout the process of 4 or 5 months, the symptom that started scaring me the most was the shortness of breath. I think by the time they came around, I had this really weird, awful, rattling sound coming from my throat. Google scared me when I googled that one up. The entire five months of these symptoms, I had gone to urgent care a couple of times, I had gone to the ER, I had seen a specialist, and I kept getting sort of brushed off, getting told, “You’re young, you’re probably just needing a little more rest, you’re probably just tired or stressed.” Cancer or any sort of serious disease was never really mentioned. But then I remember in May, going back to that same urgent care that months earlier had prescribed me an inhaler for the shortness of breath, that same urgent care doctor had finally ordered a CT scan.

He gave me a call, and there was a sort of newfound sense of urgency in his voice. He told me I needed to go to the E.R. immediately. There was a mass that was found in the scan, and it did not look good. So I just drove myself over across the street and got admitted to the E.R. That was my first hospital visit that resulted in, I think it was like a 7 or 8 day stay.

They ran a swath of tests. My blood counts came back, not looking great, but nothing to signal cancer. But it was the imaging that scared doctors the most. They had found this huge lemon-sized mass on my right upper lobe, and sort of nodules scattered across it. They ended up doing a PET scan, and that’s when they found that there was also cancer up and down my spine and pelvis, and not even my noggin was spared, unfortunately. So they knew right away that this was serious and that it was likely cancer. And so I think it was maybe on day 4 or 5 of that hospital stay that they got me in for a bronchoscopy, and then I got the news.

The moment everything changed

Getting told that I had lung cancer at 26, as a never-smoker, never picked up a cigarette, or none of that, was shocking. I did not understand how that could even be possible. I never knew that non-smokers got lung cancer. My dad died of lung cancer in his 40s. He was a very heavy smoker, so I doubt he had any sort of mutations. But because of his lung cancer death, I had made the choice early on that I would never pick up a cigarette. I wouldn’t vape because I saw what it did to others. But then to find out that that didn’t save me from lung cancer was a shock.

Ten out of ten, I would not recommend getting your cancer diagnosis in the E.R. It is awful. So take that with you wherever you go. Try to establish care with the primary care physician who knows you and your history, because getting my diagnosis in the E.R. was not pleasant, to say the least. I think I was there anywhere between 5 and 7 days. It was complicated because after I got that diagnosis, I got discharged. I got sent home with no oxygen for some weird reason. Here’s a metastatic lung cancer patient who has cancer across both lungs, up and down the spine, in her noggin, and she still got sent home with no oxygen. And I just didn’t have anyone to check up on me in the way that I would imagine others would have if they didn’t get their diagnosis in the E.R.. It wasn’t until my at-home nurse noticed that my breathing was getting progressively worse, and she told me to head back to the E.R., that they found that my situation was getting even worse. And so the second time I got admitted, I had to get an emergency blood transfusion and start traditional chemo right away, the very next day, and that was the day that my oncologist told me, This doesn’t work.

We might have to put you in hospice. Because at this point, we had not gotten the biomarker testing results back. And so that was when things finally hit me that this was serious, that I don’t have my youth, I don’t have my young age to rely on, and that something needs to happen. And so I remember lying in bed with my mom by my side at this point, just panicking internally. And that was when I decided to just start calling around to see if there was a comprehensive cancer center that would take me right away, because I did not want to be put in hospice.

I took my health into my own hands

Hearing the word hospice just rattled me to my core. I knew that I had to do something to get myself from getting buried six feet under, and so I started crawling around trying to see what the next best option was. What is an option that is more familiar with these rare types of lung cancers? At the time, I didn’t know that I had ROS1 because we were still waiting on biomarker testing. But the oncologist at the time said that it was very likely, given the fact that I never smoked and I’m so young. I started calling around to this one major comprehensive cancer center in Florida. It was right after that conversation with the oncologist, and I think the call rep could hear the shakiness in my voice because I was trying to talk through tears, just trying to see if there was any sort of openings in the immediate couple of weeks. After all, things were serious, and as soon as I was discharged, I needed to seek care elsewhere to see what other options I had. Luckily, the lady found me in an appointment, and I was able to get in on time. I think it was two weeks later, and that’s how I ended up at my second hospital.

Learning my biomarker

I was actually very lucky that my oncologist at the time knew that there was a specific subtype of lung cancers that tend to impact younger nonsmokers. And he happened to be working that day and saw my case, and he ordered comprehensive biomarker testing right away. I think I got the results after just a couple of weeks. I consider myself very lucky because if it weren’t for biomarker testing, I don’t think I’d be here today.

It allowed me to take targeted therapies, which have been shown to work well with my specific type of cancer. Targeted therapies in general have truly revolutionized what it means to be metastatic and living with lung cancer. And it’s just unfortunate that there are people across this country, across the globe, who are not afforded that option because they’re doctors, or the hospital care system just may not be aware that comprehensive biomarker testing is a thing.

I was kind of all over the place, still trying to process the news. But when my oncologist at the time mentioned that comprehensive biomarker testing could open the window to newer forms of treatments, I was like, all right, let’s do it. And then when I finally got the news and I saw that I had ROS1, which tends to impact, I think it’s like 2 to 3% of all non-small cell lung cancer cases, I was like, great, so here’s to celebrating having a mutation, I guess, let’s do it. It was an interesting, interesting time. A couple of weeks later, my brother was doing some research on my behalf, and he found this incredible nonprofit advocacy group that does a lot to build community and share resources for people with ROS1. They’re called the Ross Wonders, and they have just been a godsend to me. They showed me how to be a better advocate for myself, they’ve connected me with those long-term cancer survivors, and they’ve shown me that you can still live a long and fulfilling life, although you have metastatic lung cancer.

My treatment plan

As soon as we found out that I had ROS1, it became very apparent that we had a better option than that platinum-based chemo that I had already gotten one round of. At the time, I had also gotten radiation. But there has been such incredible research out there about these targeted therapies that the best course of action at that time was to just stop chemo and go on a TKI pill, and so I was put on my first drug.

I got about three years of pretty great response, pretty great quality of life on what I like to call my beloved drug, and it was very good to me; it kept my cancer under control, and I was able to wrangle my control. And I was able to wrangle my life back from cancer in a way that I never envisioned, because I knew nothing about targeted therapies and what sort of quality of life that might have meant. It was great for me for about three years. Unfortunately, earlier this year, I had to switch to another drug, but thankfully, things have been going pretty well on this second TKI as well.

It’s gotten a pretty good control on some of the new lesions that have popped up, and I’m still able to live a relatively normal life. I have a couple of annoying symptoms, but they’re still manageable.

Everyone’s different. Everyone’s going to react differently to each drug. We may have the same cancer with the same lesions and other comorbidities, but we may still react differently to whatever drug we’re taking. I consider myself pretty blessed because I seem to be a fairly good responder to TKIs. I don’t deal with any sort of debilitating symptoms. I know that that’s not the case for a lot of other ROS1ers; unfortunately, I wish it were. But so far, everything that’s been thrown at me has been manageable. I’ve been able to get back to my old life. I climb a lot, I bike, I’m able to take my dog on long walks, I’m able to be out in the sun and garden, I’m a very big beach bum, true Floridian. And I have TKIs to thank for that.

How I feel about clinical trials

I will say a lot of people tend to fear the idea of clinical trials because they like to think, “I don’t want to be a lab rat, I don’t know what sort of outcomes I’m going to see if I join a clinical trial studying a very new drug.”

Editor’s Note: In cancer trials, no one is given only a sugar pill when an effective standard treatment exists. Instead, participants receive either the current standard-of-care treatment or the standard-of-care plus a new therapy being studied, and everyone is closely monitored for safety and benefit. Many of the oncologists we interview describe cancer clinical trials as "getting tomorrow's medicine today."

There are a lot of incredible treatments out there that are revolutionizing what it means to live with these sorts of subtypes of lung cancer, whether it’s ALK, EGFR, or ROS1, like what I have. These therapies are exciting; they’ve shown a lot of great promise. A lot of times, these drugs are being tested for years in a clinical trial setting, and there is early data that you can glean from and decide if that’s a good option for you at the time. If I’m ever at a point where I do run out of TKIs, I will gladly volunteer for science and to help the next lung cancer patient get access to even better drugs in the future.

How I’m navigating my diagnosis and being young

Navigating cancer in your 20s and 30s is incredibly messy; it is chaotic. It is a roller coaster you go through, so many loops, it’s complicated.

I’m not going to deny that, it’s not an easy feat. I’m metastatic, which has caused me to grow up in a lot of different ways. For people who have been diagnosed at earlier stages, it is life-changing. Just because treatment wraps up and your hair grows back and you’re in remission or you’re cured, does not mean that your life goes back to normal or that you’re even the same person you were the day that you were diagnosed. So it is complicated, and I try to remind every cancer patient that I meet to just give themselves grace. It is a work in progress. I am three years out, three years into survivorship, and I am still learning what it means to live with metastatic cancer, and to live each day as if I’m living, not as if I’m dying.

Honestly, I try to just make the most out of whatever time I have left. If it is three months, if it is three years, if it is six years. Let’s pray for six years, I will take six years happily. I like to treat every day like a new day.

And if I’m having a crappy day or just the type of day where you just don’t want to get out of bed and you’re just stuck doom scrolling on your phone, I try to remind myself that tomorrow is a new day.

I used to just get stuck on all the what-ifs. Like, what if I spoke up sooner? What if I pushed for answers sooner? Would my life have been different? Would my cancer have been when it was stage 2 or 3 instead of stage 4? But at the end of the day, what does that do for you? What are you thinking about, the crappy cards that you were dealt day after day? What does that do for you? And so I try to just remind myself to focus on the things that I can control. And that is what my life moving forward is going to look like. Whether that’s for three months, three years, or however long, I know that I just want to make the most of each and every day.

“Hope” is a complicated word for me

I am cautiously optimistic that I will be able to get a good chunk of time out of whatever TKI lines are currently available. And I hope that I will be able to respond well to those therapies until the next best thing comes out.

And there are a lot of really new and exciting TKI drugs currently being studied in clinical trial settings. I try to talk to my cancer from time to time and just be like, “Oh, Carl, can you give me three years of peace, until that next best thing comes out?” I know that next year there’s going to be another TKI out in the market, or at least that’s what my oncologist has said, and what we hope is that it’s going to get approved by the FDA. I try to count my blessings every day and try to beg Carl from time to time to just behave for a little longer, and just go from there.

I like to view my cancer as an insidious roommate that just does not pay rent, that has been uninvited. What is the most awful name you could give that imaginary roommate? And the first name that came to mind is Carl, so his name is Carl.

Carl used to be lemon-sized, around five centimeters. I think he’s down to two centimeters, and he’s been stable.

He’s been behaving this way this whole time. It’s just that I get random lesions outside of the primary tumor that pop up, but for the most part, he’s been good.

What I want others to know

My last piece of advice would just be not to take a lot of stock in survival statistics or prognosis. My first oncologist told me I likely had just three months to live; lo and behold, I’m still here. Three years later, and I’m still going strong, I’m still kicking.

And I hear it all the time in the lung cancer community, fellow patients who have been given months to live, a year to live, and they’re still doing well. And while that may not be true for everyone, there is reason to remain cautiously optimistic because newer therapies are coming out every couple of years, and science is advancing in a lot of incredible ways.

I want people to know that anyone with lungs can get lung cancer. You do not have to be smoking eight packs of cigarettes a day to get lung cancer. I was 26 when I was diagnosed, and I have not once picked up a cigarette or a vape or any of that stuff, but I still got diagnosed with stage four non-small cell lung cancer. It is something that is happening to more and more young people, year after year, and we don’t know why. It’s terrifying.

If you’re feeling out of breath, if you’re seeing a lot of troubling symptoms that don’t make sense, whether it’s back pain and then this weird rattling sound coming from your throat, and you’re getting told by your doctors you’re fine, it’s probably pneumonia or asthma, here’s an inhaler, don’t listen to them. Seek better care and keep pushing for answers, because lung cancer cases amongst nonsmokers are going up. And at the end of the day, you’re going to be your own best advocate.

Thank you for sharing your story, Drea!

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Micheal Finds Hope with an Inoperable Brain Cancer by Joining a Clinical Trial

Post author By Chris Sanchez
Post date November 3, 2025
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November 3, 2025

Micheal Finds Hope with an Inoperable Brain Cancer by Joining a Clinical Trial

Micheal opens up about his experience with inoperable brain cancer. His story started in early 2025, when he began feeling random waves of nausea and dizziness, often after waking up or lying flat. At first, he thought he’d eaten something bad. Even his local doctor suspected simple balance issues caused by dislodged ear crystals. But when the right side of his face gradually weakened and his eyes began to twitch, he knew something more serious was going on.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

After several MRIs, doctors confirmed that Micheal had a diffuse midline glioma (DMG) in his brain stem, a rare, aggressive type of brain cancer that, in his case, can’t be removed surgically. Hearing the diagnosis left him numb, yet he leaned on his family, faith, and humor to cope. His mom strongly encouraged a second opinion, which led them to Mayo Clinic, where he underwent a biopsy. While the procedure left him with facial weakness, partial numbness in his left arm, and some vision changes, Micheal remains mobile and independent.

Treatment has involved Micheal joining a clinical trial that’s focused on short rounds of radiation. Instead of doing six straight weeks of radiation, he receives two weeks at a time and then goes under observation. This approach allows his body to recover between treatments, which helps him both physically and mentally. He has had to deal with side effects like nausea, dizziness, and hair loss, but he’s grateful for the chance to keep moving forward.

Thanks to his experience, Micheal’s outlook on life has grown deeper and more meaningful. He takes time to appreciate small moments, like walking and noticing the world around him. He keeps his mental health in check by staying hopeful, joking with his mom, and setting goals for the future, like finally earning a pilot’s license when his vision improves. The advice he offers others is simple but powerful: never take life for granted, help others when you can, and always be the best version of yourself.

Micheal reminds everyone that having brain cancer doesn’t erase the possibility of joy, love, and purpose. Hope, for him, is waking up each day with the belief that there’s still life to live and a future to work toward.

Watch Micheal’s video and scroll through the transcript of his interview below to:

Learn the subtle symptoms that can signal something far more serious than dislodged ear crystals
Understand how Micheal turned a life-changing diagnosis into a story of hope
Find out more about the clinical trial that gave him a chance to keep moving forward
See the small daily moments that have brought Micheal joy in the face of brain cancer
Read his simple yet powerful advice for living with purpose

Name: Micheal J.
Diagnosis:
- Brain Cancer (Diffuse Midline Glioma)
Age at Diagnosis:
- 25
Grade:
- Grade 4
Symptoms:
- Vertigo
- Eye nystagmus
- Weakness on the right side of the face
- Dizziness
Treatment:
- Radiation therapy, as part of a clinical trial

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Transcript of Micheal’s Interview

My name is Micheal
When I first noticed something was wrong
The moment everything changed: getting my diagnosis
How I felt when I heard “You have a mass”
My mom pushed for a second opinion
What my biopsy did to me
I decided to go on a clinical trial
The side effects I’m experiencing while on the clinical trial
It’s hard to accept that surgery isn’t an option for me
My biggest challenge, staying connected, and finding normalcy
Cancer has changed my outlook on life
Living with my eye issues and next steps
Hope keeps me motivated
My biggest piece of advice to others

My name is Micheal

I was diagnosed back in April of 2025, and I live in Iowa.

What I like to do is I like to play a lot of video games. I like to take my dog out for walks. Lately, I have been doing a lot of pushups. I was really big into fitness before this, and I still am.

My partner and I, I consider her my wife because we have been together for almost four years now, we do not have any kids. Before the diagnosis, we were in the process of figuring things out, getting a house, getting married, and everything. We are still thinking about getting married, but right now we are just kind of waiting on medical bills and stuff like that.

When I first noticed something was wrong

I first started noticing symptoms back in February, very early February. My family and I went out to Minneapolis, Minnesota, to go to the Mall of America, and we also saw a hockey game while we were up there. While we were there, I started waking up in the mornings and randomly feeling very, very nauseous for no reason. I just kind of marked it up as maybe I ate something bad.

We ended up getting back from Minnesota, and I want to say this was about the middle of February. After we got back from Minnesota, I ended up calling in [sick to work] for an entire week because I just could not lie flat anymore. I could not lie fully on my back without getting a really bad, dizzy spell. The best way I can describe a dizzy spell is if you were to stand still and spin in a circle, and just stop, and you just kind of let your equilibrium go crazy. It was not fun.

It was around that time that I felt I had to do something because I could not keep calling in. So I went to my local doctor down here, and they said it could be my ear crystals, the little crystals in your ear that help out with your balance and everything. They said sometimes those can get dislodged and cause these vertigo‑like symptoms.

They gave me some medication, and it helped with the dizziness, but with me being a diesel mechanic and going underneath the trucks all the time, lying flat like that on a creeper was not fun for me. I would get up off the creeper and go straight to the trash can, essentially. It was around then, when I could not stand it anymore, that I felt there had to be something more going on.

We were getting closer to March, around the end of February, when I started getting facial weakness on my right side. I could not really smile on this side, and I could not blink very well on this right side. So I contacted my doctor and said, “Something is going on.” He said, “What I am going to do is send you up to the ENT, ear, nose, and throat doctor, just to make sure that it is your ear crystals or if it is something more.”

I went through a couple of tests at the ENT doctor out in South Dakota, and that is where they ended up finding my eye nystagmus. Eye nystagmus is when, if I look completely to my right or completely to my left, my eye will bounce back and forth. They were the ones who said I should get an MRI done. I did not get an actual MRI until closer to April, which is really sad to say, but that is just how the process went.

The moment everything changed: getting my diagnosis

I went into the hospital to get an MRI, and that is where they found a mass. There are not a lot of neurosurgeons or neurologists down here in Sioux City. So they sent me from our Saint Luke’s hospital to our Mercy hospital, where they have a neurologist. That is where I did another MRI, and they basically wanted to do surgery right away to see if they could get it out of there.

I ended up staying the night there, and the next morning, they said they were going to send me up to Omaha because they could not really tell where this thing was, and they have better MRI machines up there. The doctor did not want to just go in and start trying to cut out something he could not see. So they took me up to Omaha and did another MRI there.

That is where they found that it was inside my brain stem. It is called a DMG, which is a diffuse midline glioma. Essentially, it is completely smooth and has no borders, which means it is fused to my brain stem. That is where they gave me the prognosis, and they wanted to do traditional radiation and send me back down here.

How I felt when I heard “You have a mass”

When they first walked in and told me, I honestly just felt very numb at first. I did not know what to think. What I did next scared a lot of doctors, but I basically took off the medical stuff they had hooked up to read my heart and everything, and I looked at my mom and said I was going to go for a walk.

I had my best friend, Kevin, with me, and I had my wife, Becca, with me. We walked down to the church that is in the USMC hospital. That is where it really hit me, and I broke down there. It took a lot to come to acceptance. It is not a great prognosis, but we all have a lot of faith.

My mom pushed for a second opinion

This is actually a really good part of my story, because this is where my mom comes in. I love my mom to death. She is the one who said, “No, I cannot accept this.”

After I went on my little journey, a couple of doctors had to come and find me and tell me that I could not just be walking off like that. We ended up coming back home to Sioux City, and my mom reached out to a couple of her friends who had cancer. They basically said, “Get to Rochester. Go to Mayo. Get a second opinion.”

My mom called me up the next day, a day after we got home, and said, “Let’s just go out to breakfast. I want to talk to you a little bit.” We have a little breakfast place out here called Johnny Marr’s, really good for breakfast. That is where she said, “Why don’t we just go up to Mayo? They are the best in the US right now. They are number one. What is the harm it could do?”

So we drove four and a half hours that day, went into the emergency room, and we were there for quite a while. I think we got up to Rochester around eight at night, and we did not get out of there until almost two or three in the morning.

They had a neurosurgeon in the emergency room. Her name was Sarah, a very, very nice lady. She is the one who said straight up, “I am going to help you, and I am going to send a personal message to Dr. Parney,” who was one of the top neurosurgeons there. She said, “I am going to talk to Dr. Parney, and we are going to get something figured out.”

Within days, like two days, we were already getting a call from Mayo saying they wanted to schedule a biopsy and talk to me about it and see how I felt. We ended up setting up the appointment and going to Mayo. Dr. Parney is a very, very nice man. He basically said he could do a biopsy on this.

He said there was about an 85% chance of him coming out completely normal, as if nothing happened, a 15% chance of some damage, which is where the facial weakness and arm issues come into play here, and a less than 1% chance of death. He did the biopsy, and I signed some papers. They ended up grabbing two samples. They grabbed a sample from me, and they also grabbed a sample to further research on DMGs and DIPGs, and that is basically how that went down.

What my biopsy did to me

The after‑effects, when I first woke up, were rough. I could not move the right side of my jaw very well. There is still some Bell’s palsy going on on this side of my face. It took a little bit to regain some of the movements in my face, but I can finally chomp down like normal again.

My right eye does not close very well. My eyelid goes about halfway down and then stops. I cannot really move my right eyebrow very well. My left arm, from about the pectoral muscle all the way down to my fingertips, is still kind of completely numb. I am starting to regain some feeling in my fingertips, which is really good, but the rest of my arm is still fairly numb.

I am still able to walk. I am still able to talk, swallow, all the normal things you are normally able to do. It is just my face and arm, mainly.

I decided to go on a clinical trial

With DIPGs and DMGs, the treatments are still fairly limited because there are a lot of ongoing clinical trials. Dr. Breen is my radiologist, and he said that photon radiation is the best type of radiation therapy for these types of tumors.

When we were talking about it, he basically gave me an option. He said I could do the full six weeks of radiation in one go and essentially see what happens. Or, he had been working on a clinical trial. This clinical trial includes doing my first two weeks of radiation, and then they will go on observation from there. Essentially, if this thing tries to grow or go anywhere else, then you hit it with another two weeks of radiation. The idea is to prolong the treatments.

When you do your full six weeks, you have to take, I believe, six months to almost a year off treatments just to let your body recover and heal. When he brought up those options, my mom was the one who straight-up asked him, “If this were your child, which one would you choose to go for?” He said he would go for the clinical trial, just because a full six weeks of radiation on a tumor in such a very, very, very sensitive area of the body could either grow or shrink it at a rapid pace and pull that brain stem down with it.

So we opted for the two weeks of radiation, then going in once a month for an MRI to see how the tumor is doing. If it tries to progress or get any worse, then we hit it with another two weeks of radiation. They have been talking about a pill called ONC201, but my doctor still has to talk to other doctors about it and see if I am qualified for it.

The side effects I’m experiencing while on the clinical trial

After the first two weeks, I was very, very nauseous. I was nauseous during the radiation as well. That was my main issue: the nausea.

After the two weeks were done, I got home, and they had told me this thing might swell a little bit. My doctor talked about it like training for a boxing fight: if you get hit in the eye too many times, your eye is going to swell up, and then eventually that swelling is going to go down and get better.

My first week home, I felt a lot of pressure in my head. The dizzy spells were pretty bad that first week. But as time went on, things started improving. I started getting fewer dizzy spells. My eye nystagmus has gotten better, and I have been able to move around a lot better.

Thankfully, I have never had any issues during this journey with my mobility. I have been able to keep my mobility as normal as possible. But the first couple of weeks after radiation are rough. That is when my hair started falling out in the back of my head a little bit, where they were doing the radiation. Other than that, it was pretty okay.

It’s hard to accept that surgery isn’t an option for me

It is hard. It is very hard. I am not going to lie. On Facebook, I have joined some support groups where people were able to get their tumors removed. They did not have the same thing I did, but they were able to get theirs removed.

To me, I feel like if the tumor is removed, you have a little bit more of a fighting shot because there is nothing there pushing up against the optic nerves. There is nothing there. I know that they can recur, but it is still kind of hard for me. I am slowly accepting it.

I just keep praying and keep telling myself that I have been in my body for 26 years, and this thing has been in my body for a couple of months, and I am going to make sure this tumor dies.

My biggest challenge, staying connected, and finding normalcy

Honestly, right now, it is my vision. My right eye has always been the stronger eye because I was born with a lazy eye in my left one. Without my glasses, I am practically blind. That is really my biggest issue right now.

Because of how long I have had my eye taped down, I have pretty bad double vision right now. Those are my two big issues. Other than that, everything else has been going really, really well.

Honestly, going back to work has helped a lot. I am on light duty right now. My doctors have advised me to only do about 32 hours a week because out here in Iowa, that is federal law; you have to hit 32 hours at least to be considered full-time. The good thing about being back at work is I get to keep my insurance, and we have really, really good insurance. Medical bills have been very easy for now.

Coming home and being able to be with my wife and our roommate, just being able to relax and talk and talk about different things other than what is going on with me, helps. It is hard to think about the prognosis they gave me because I am so young. But the good part about being in support groups is that you see a lot of long‑term survivors. That has helped quite a bit.

I will go on there sometimes just to see how people are doing. We all talk about how we are feeling, and that is where I get my wording out the best—through those support groups.

Cancer has changed my outlook on life

Honestly, not much in terms of who I am has changed, but I do have a better outlook on life. It is sad to say, but sometimes it takes a life‑changing event to make you realize the beauty of life in general. You get so stuck in the “go home, go to work, go home, go to work” routine and the constant list of what you have to do when you get off work.

Lately, I have just been kind of stopping and smelling the roses a little bit. Just being able to walk outside, even at work. We have a very big parking lot for our trucks out there. Every morning when I get to work, I walk that lot all the way down and walk all the way back to the shop, just admiring things, admiring the life that I still have.

It has been very, very life-changing. My goal was always that I wanted to be a pilot. Obviously, with my vision issues, that has been put on hold for a little bit. I had a lot of options for what I wanted to do. I was very big on taking things apart and putting them back together, and that is why I became a diesel mechanic. At the time, I was thinking, “I am going to do this for now, and I am going to work on getting my pilot’s license.”

Then this happened, and now I am at the point where once my vision gets back, I am going to go for my pilot’s license. A couple of things have been stepped up a little bit more in terms of urgency.

Living with my eye issues and next steps

It is hard for me to blink in general. In all honesty, they really have not said anything specific about fixing it yet.

We are all at that stage of “maybe just give it some time, and this will come back,” especially because I told them about the feeling coming back in my hand.

My next MRI is October 3rd, and that is where I am going to ask if maybe we could put something in my eyelid to weigh it down so I can start keeping moisture in that eye. With it being taped down, a lot more power is going into my other eye, which is causing the double vision.

Hope keeps me motivated

At first, before my diagnosis, hope was just a word. You hope that this happens, you hope that that happens. But now hope takes on a different meaning for me.

Hope is what brings me some joy in my life. It is what brings me the confidence to keep going. It means a lot to me right now. It is the reason why I wake up in the mornings. It is the reason why I keep fighting: the hope that I am going to live a long life, the hope that I am going to be able to spend time with my family.

It is just a joke, but my mom and I have been cracking jokes lately. I told her, “No offense to you, Mom, but I hope I bury you first before you bury me.” She said, “In all honesty, no offense, I hope the same thing.” That is what hope means to me: being able to think about the future like there is no tumor in my head.

Being able to think, “Yeah, I am going to have kids. Yeah, I am going to be able to see my grandkids grow up.” That is what hope means to me lately.

My biggest piece of advice to others

Do not take life for granted. I definitely took my life for granted. I was one of those people who always said, “Oh, I’ll do it later. I’ll do it later. I’ll do it later.”

Do not let a life‑changing event, whether it be cancer, traumatic brain injuries, or whatever it is, be the reason you stop putting life first. Do not put your life on hold just because you think you have time.

Nobody ever expects to get something like this. I definitely did not expect to get this. I was healthy, there was nothing wrong with me, my blood work was fine, and it all started just by getting dizzy, all because I could not lie flat on my back.

If you are able to help somebody, help them out. If you see that person on the side of the road who does not know how to change a tire, what is the harm in helping them? Always try to be the best you that you can be.

I lived my life by asking, “Why be a jerk? Why live your life being a jerk?” Be the best version that you can be now, and then you can take that with you. You can always take that with you. Nobody can ever take your personality away from you.

Thank you for sharing your story, Micheal!

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Biomarker Testing Gave Lysa New Hope with Stage 4 ROS1+ Lung Cancer

Post author By Chris Sanchez
Post date November 3, 2025
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November 3, 2025

Biomarker Testing Gave Lysa New Hope with Stage 4 ROS1+ Lung Cancer

I was 40 years old, very busy, still raising my kids, and working and going to school at the same time when I was diagnosed with stage 4 ROS1+ lung cancer. Lysa’s experience highlights her resilience and serves as a prime example of what self-advocacy can lead–in her case, lead to a new therapy.

At 40, she experienced severe mid-back pain that she and doctors initially thought was just a pulled muscle. Later, however, her symptoms worsened, leading to a shocking diagnosis: lung cancer that had already spread to her spine.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Though her lung cancer was initially responsive to chemotherapy, Lysa was determined to learn more about it. This pushed her to reach out to fellow lung cancer patients on online patient communities. She also learned about biomarker testing, which empowered her to seek a second opinion, ultimately undergoing surgery solely to obtain tissue for comprehensive biomarker analysis. The result? She discovered she was positive for the ROS1 mutation. This qualified her for targeted therapy that significantly improved her quality of life.

When her non-small cell lung cancer progressed, Lysa didn’t settle. She advocated for herself again, enrolling in a clinical trial that has kept her stable. Thanks to targeted therapy and clinical trials, she’s celebrated many milestones, including her daughter’s graduations and the birth of her first grandson, as well as other important moments with family and friends.

Lysa’s stage 4 ROS1+ lung cancer experience shows how critical biomarker testing and clinical trials are in expanding treatment options. Her story is a testament to the power of self-advocacy, community support, and the importance of never giving up on seeking better care.

Watch Lysa’s video and read her story below to:

Find out how her back pain revealed her life-changing diagnosis
Learn why biomarker testing became Lysa’s game-changer
Discover how a targeted therapy and a clinical trial gave her more time with her loved ones
See how Lysa’s self-advocacy with ROS1ders changed her stage 4 ROS1+ lung cancer care
Meet the woman who thrives beyond her diagnosis

Name: Lysa B.
Age at Diagnosis:
- 40
Diagnosis:
- Non-Small Cell Lung Cancer (NSCLC)
Staging:
- Stage 4
Mutation:
- ROS1
Symptom:
- Severe but intermittent back pain
Treatments:
- Chemotherapy
- Radiation therapy
- Targeted therapy, including through a clinical trial
- Surgeries: lung resection, metastatic spine tumor surgery

Thank you to Nuvalent for supporting our patient education program. The Patient Story retains full editorial control over all content.

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.

Table of Contents

About Me
When I First Noticed That Something Was Wrong
The Moment Everything Changed
How I Learned About Biomarker Testing
Learning I was ROS1+ and Taking the Only Treatment Option Available Then
I Joined a Clinical Trial When My Stage 4 ROS1+ Cancer Progressed
Targeted Therapy Has Changed My Quality of Life for the Better
Anyone With Lungs Can Get Lung Cancer
My Advice to Others

You think you’re doing what you can to take care of yourself. I quickly learned that none of that really matters. If you have lungs, you can get lung cancer.
Lysa B. – Lung cancer patient

About Me

Hi, I’m Lysa.

I was diagnosed with stage 4 non-small cell lung cancer with an ROS1 mutation.

When I First Noticed That Something Was Wrong

I had just graduated from college. I was 40 years old, very busy, still raising my kids, and working and going to school at the same time.

I started having back pain. It wasn’t a typical lower back pain that you’d get by straining yourself doing something, though that’s what I kept telling myself. It was a little bit higher, right in the middle of my back.

My husband and I took our daughter to California for a vacation, and we visited SeaWorld in Disneyland. There were two nights when I would lie down, the pain was so bad that I felt like I couldn’t breathe right, and I couldn’t sleep. My husband said, “We have to go to the E.R., we have to figure out what’s going on.”

We went to the E.R. around midnight. There, they were concerned about my kidneys because of the back pain. But my kidneys were fine, so they thought I’d just pulled a muscle. They gave me a few muscle relaxers and pain medicines to get me through the weekend, and they told me, “Follow up with your doctor when you get home.” And the next day we went to Disneyland for 12 hours.

I agreed that I must have just pulled a muscle. Everything seemed to be fine. I was 40. I was healthy. I was a runner. I was in great shape at the time, or so I thought. So you shouldn’t ever believe that cancer is not on your radar.

The pain was intermittent, so I was able to ignore it and push through. I was taking a lot more Tylenol at that point, icing the area, and getting massages. But it wasn’t getting better.

I went on a vacation to see my family in Kentucky, and the pain got so bad coming home from the airport. I was traveling alone, and I remember calling my mom, crying, and telling her, “I can’t even walk through the airport right now.” She went, “Get a wheelchair, just get home. We’ll take care of it.”

The next morning, we went to the E.R. again, this time to an E.R. near where we lived. They did multiple tests, a CT, a full MRI of my entire spine to try and see where the pain was coming from, as well as a chest X-ray.

I was in great shape at the time, or so I thought. So you shouldn’t ever believe that cancer is not on your radar.
Lysa B. – Lung cancer patient

The Moment Everything Changed

Several hours later, the E.R. doctor came in and told us, “You have to sit down. It appears that you have stage 4 lung cancer that’s already spread to your spine.”

I had just lost a friend to lung cancer about five months before that, and she had only been 43. So I immediately thought, “Oh my God. Who’s going to raise my kids?” My son was 19, but he still needed me. My daughter was 11.

You think you’re doing what you can to take care of yourself. I quickly learned that none of that really matters. If you have lungs, you can get lung cancer. Unfortunately, sometimes you’re just dealt a crappy hand.

How I Learned About Biomarker Testing

Right after I was diagnosed, I found an online forum where I started talking to other patients. Mostly, I just connected with them and tried to seek support. And through that forum, I learned so much about lung cancer.

It’s not one disease. You don’t just treat it one way. And there are biomarkers, which are proteins that drive your cancer to grow. They are specific to certain lung cancers, and they typically tend to be in younger women, mostly under 50.

I did talk to my oncologist about it, but I was having a great response to chemo at the time. So she just said, “When the time comes, we’ll look into that.” I was okay with that for a while, and it wasn’t until I had progression about 15 months later that we decided to try and do another biopsy to get enough tissue to do biomarker testing.

At that point, my tumor had a lot of scar tissue around it. It was in a hard-to-access spot. We had done two needle biopsies through my lung, which were inconclusive and didn’t have enough tumor DNA actually to tell if there were any biomarkers or not. So my oncologist wanted to try another chemotherapy, and at that point I said, “There’s got to be something better than this.” And I switched oncologists.

Learning I was ROS1+ and Taking the Only Treatment Option Available Then

Within a couple of weeks, I was seeing a new doctor, Dr. Vogelsang. He pushed for me, and that validation helped me realize that this man was going to help me do whatever I needed to do for however long I wanted to do it.

At the time, it took several weeks to get my results back. It was stressful, and I was trying to be hopeful. Plus, I was recovering from surgery.

My phone rang at 10 p.m., and I don’t normally answer my phone if I don’t know who’s calling me, but I answered, and it was Dr. Vogelsang. He said, “We’ve got great news, your results are in. And you’re ROS1-positive.”

He was super excited about it, and I was too. I knew that meant I was eligible for targeted therapy. I wouldn’t have to do chemo anymore. So it was great. It was literally a game-changer for me.

By the time I found out what my biomarker was, it was 2013. I had already been diagnosed with and living with lung cancer for 18 months. I started getting nervous around that time; it was like I was feeling I was on borrowed time. I wondered when it was going to quit working.

I was eligible for targeted therapy. I wouldn’t have to do chemo anymore… It was literally a game-changer for me.
Lysa B. – Lung cancer patient

I Joined a Clinical Trial When My Stage 4 ROS1+ Cancer Progressed

We added chemo to my targeted therapy in the hope that it would get me at least to the end of that year, seven or eight months away, before I might start on that drug. Well, I remained stable with that combination for another five years, so I was able to stay on my first targeted therapy for ten years.

By the time I progressed again after those five years, I had a new biopsy. I did have new metastases in places I’d never had before, and it seemed to be fairly aggressive. It went from nothing on a scan to not significant to more than doubling in size two months afterward. I knew we had to do something quickly.

We did a biopsy on my 50th birthday. That was fun. And based on those results, I decided to go on a clinical trial. So in June 2023, just over two years ago, I started a phase one clinical trial that I had to travel to Tennessee for.

I’m still in that trial. I actually went again just last week. I just got my scan results back, and I’m still stable. So I’m extremely happy about that.

I feel pretty good on this drug, which is nice. And I don’t have to do chemo anymore. Because of this drug, I’ve lived long enough to see my first grandson. The drug is in pill form. I’m able to have my scans at home.

Targeted Therapy Has Changed My Quality of Life for the Better

When I was diagnosed, my youngest was 11, and she was in fifth grade. Honestly, my first goal was to see her graduate from high school. I wanted to give her that much, at least, to get her there. Of course, I was the loud lady at her graduation. I was so excited and crying and bawling.

I’ve since gotten to see her graduate from college. I have just had our first grandson this year. And my son was 19; he was older, but he still needed some help, and I have been able to see him flourish and find his way in this world.

My husband and I love to travel and eat. I have a great friend group here. We do trivia every week. My parents live two miles from me; I just hung out with my mom all day the other day.

I know I’m lucky that I can do those things. I’ve always been such an on-the-go person, the type who has to take care of everything right now. I can’t go to bed till the dishes are done, that sort of thing. I need structure, and I might have been a little extreme.

Now, I don’t care if there are dishes in my sink. I try not to let external things get me down. And I focus on trying to find the joy in every day.

My biggest happiness is when I’m with my family and my dogs. I love my dogs.

I try not to let external things get me down. And I focus on trying to find the joy in every day.
Lysa B. – Lung cancer patient

Anyone With Lungs Can Get Lung Cancer

One of the first questions many people ask you when you tell them you have lung cancer is, “Did you smoke?” It used to make me angry, because it felt accusatory. But I really think when people ask that question, if they’re nonsmokers, they’re trying to be like, “Oh, well, that’s why you got it.”

I honestly don’t think they come from a bad place, but it makes you feel bad, like you have to defend yourself. My grandmother died of lung cancer, and she was a smoker her whole life. Can we blame her for her death?

Everyone deserves access to care. We have lung cancer. It doesn’t matter how we got it. And there are many risk factors out there, so many that we don’t even know how to correlate them, though we do know that they contribute to lung cancer.

I have friends who are vegetarians, yoga instructors, lifelong runners, and so on. People who thought they did all the right things. And yet we still got lung cancer. I still ended up getting stage 4 ROS1+ lung cancer.

Cancer doesn’t discriminate.

You do not have to be alone.
Lysa B. – Lung cancer patient

My Advice to Others

There are patient groups for most of these biomarkers. There are maybe a dozen online. Many of them have websites. You can look them up and join them. You do not have to be alone.

They are a huge source of not only support but also knowledge. Like the ROS1ders in particular. It is scientifically vetted by researchers, as well as all of our information about the drug options. What works for us, what doesn’t, how to deal with side effects. There are patient stories on there. There is a large community out there that many people might not know exists. I am proud to be part of ROS1ders.

These patient groups aren’t just for other patients. We’re seen and invited to medical conferences now. Doctors and researchers collaborate with these groups to do better for the people in our community. So please reach out to them if you have a biomarker. It’s so important.

Special thanks again to Nuvalent for its support of our independent patient education content. The Patient Story retains full editorial control.

Thank you for sharing your story, Lysa!

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Choosing Life on Her Terms: Pippa’s Stage 4 Vulvar Cancer Story

Post author By Chris Sanchez
Post date November 2, 2025
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November 2, 2025

Choosing Life on Her Terms: Pippa’s Stage 4 Vulvar Cancer Story

Pippa shares her stage 4 vulvar cancer experience. Diagnosed in January 2023, her early symptoms were subtle, including persistent soreness and discomfort that eluded quick fixes. From the start, she leaned into her intuition, seeking answers and refusing to dismiss what her body was telling her. Eventually, she was diagnosed with stage 1 vulvar cancer — a diagnosis that shifted to stage 3 and, ultimately, stage 4 once it was found to have spread.

Interviewed by: Carly Knowlton
Edited by: Chris Sanchez

Soon, Pippa had to deal with surgeries, including a total pelvic exenteration. Repeated hospitalizations and side effects of her vulvar cancer treatment took their toll. She describes physical discomfort, mental exhaustion, and adjustments to routines, but always underscores how grateful she is to have received unwavering support from her husband, family and friends, and her employer as well.

Pippa was at times overwhelmed by the treatments for her rare cancer, especially when options dwindled after recurrence. Despite the recommendation for more intensive chemotherapy, Pippa chose quality of life over harsh intervention, a defining moment in her experience. New routines emerged, built on patience and realistic expectations. She learned to walk again, embraced ostomy care, and shifted to slower, more deliberate daily rhythms.

Beyond her treatments, Pippa also works to raise awareness for vulvar cancer. She helps other women navigate early symptoms and speaks openly about the mental and emotional challenges of living with such a diagnosis. She emphasizes that “there is life with cancer” and that advocacy, community, and small joys, be they dog walks, time spent with loved ones, or moments in nature, offer resilience through uncertainty.

Pippa’s stage 4 vulvar cancer experience helps rewrite what it means to live fully with cancer and reminds us of the power in listening to one’s body and advocating for care. Watch her video and read through her transcript below. You’ll learn about:

Trusting your instincts and advocating for yourself, because persistent discomfort deserves immediate attention
How the support of loved ones, community, and compassionate medical professionals dramatically impacts mental and emotional well-being
How treatment exhaustion and physical limitations demand patience and realistic expectations; routine tasks become part of recovery and adaptation
The meaning and dignity to be found in living with cancer
How Pippa transformed her experience into advocacy, raising awareness for vulvar and vaginal cancers and empowering others to seek care and speak up

Name: Pippa S.
Age at Diagnosis:
- 47
Diagnosis:
- Vulvar Cancer (Metastatic)
Staging:
- Initially Stage 1; progressed to Stage 3; currently Stage 4 and terminal
Symptoms:
- Persistent itching
- Red patch of skin inside left labia that turned into a wart-like lump
- Bloody discharge
Treatments:
- Surgeries: wide local excision, lymphadenectomy, total pelvic exenteration, colostomy surgery, urostomy surgery
- Radiation therapy
- Chemotherapy

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Transcript of Pippa’s Interview

Hi, I'm Pippa
Surgeries, tubes, and recovery challenges
Complications after surgery: infections and skin issues
The first warning signs
Fast-track diagnosis: a rare cancer identified
Staging and unexpected test results
Radiotherapy and chemotherapy: intensive treatment
Recurrence: facing stage 4 and new surgeries
The largest surgery: total pelvic exenteration
Living with side effects and adjusting to daily life
The importance of support from family, friends, and my employer
The impact on my mental and emotional health
Shifting identity and living meaningfully
Monitoring and looking ahead
My advice for patients and raising awareness

Hi, I’m Pippa

I was diagnosed with vulvar cancer in January 2023.

I’m a big foodie. I love cooking and baking, and I work in the food industry. I enjoy walks, hikes, and seeking out new restaurants. I have a passion for travel, exploring new places rather than relaxing by the pool, and I’m a dedicated Lego collector.

Surgeries, tubes, and recovery challenges

After my last surgery, I had an NG tube inserted through my nose into my stomach to feed me, because my abdomen had gone through so much trauma that I couldn’t tolerate any food. I was violently sick with everything I ate, so I was tube-fed for about ten to fourteen days. It was extremely uncomfortable. One day, I became so sick that I vomited the tube up and refused to have it put back in.

Complications after surgery: infections and skin issues

After one of my surgeries, I developed an infection. During the night, I must have scratched myself and introduced bacteria, leading to cellulitis. My neck and face became dry and peeled repeatedly, leaving raw skin. This happened about five times, and I ended up hospitalized. At one point, strangers thought I had a terrible sunburn, but a kind security guard recognized it was cellulitis and offered advice that made me feel genuinely cared for. That really made me feel very loved.

The first warning signs

The first red flag was a sore, itchy patch inside my left labia that became increasingly uncomfortable. Over-the-counter creams and medications didn’t help. It eventually formed a wart-like lump, and even lidocaine couldn’t relieve the pain. I experienced walking, standing, and sitting discomfort, bleeding, a bloody discharge, and pain during sex. Eventually, I no longer wanted to have sex at all because it was so painful. That’s when I scheduled a doctor’s appointment.

Nothing was getting rid of it, and I just kept persevering. I was just so uncomfortable.

Fast-track diagnosis: a rare cancer identified

Thankfully, my doctor had seen vulvar cancer, this rare cancer, before, and immediately suspected either an infected cyst or cancer. Antibiotics did nothing, so she referred me for a biopsy. Even before the diagnosis, I knew in my heart it was cancer.

The biopsy confirmed early-stage vulvar cancer, which wasn’t a surprise at this point. The biopsy itself was extremely painful and left me in agony for days.

Staging and unexpected test results

It was initially diagnosed as stage 1; my scans didn’t show cancer elsewhere. Surgery removed the tumor and some lymph nodes, but two of those nodes were cancerous, so I was told it was now stage 3.

I was shocked but not surprised. My gut instincts had been correct from the start.

Radiotherapy and chemotherapy: intensive treatment

I received 25 rounds of radiotherapy and five rounds of chemotherapy over five weeks; Monday through Friday for radiotherapy, and a full day at the hospital for chemo every Wednesday.

Recovering from these treatments was exhausting. I did most of it alone because I just didn’t have the energy for conversation. Netflix kept me company during those long hospital days.

Recurrence: facing stage 4 and new surgeries

By January 2024, symptoms reappeared on my right labia and near my back passage. I had further biopsies, surgery in March, and again in July, each time taking more suspect tissue. Soon after, scans revealed the cancer had reappeared internally in my right groin and in my lung.

Because previous radiotherapy ruled out more radiation and more surgery was considered too risky, the only remaining option was high-dose chemotherapy. I declined, wanting to avoid spending my remaining time very ill and instead focus on quality of life.

The largest surgery: total pelvic exenteration

In October 2024, I had a total pelvic exenteration, a rare and massive surgery. Most of my large bowel, my back passage, bladder, vagina, and uterus were removed.

I now have two stomas, a colostomy and a urostomy bag, and while I initially worried about them, they are simply part of my daily routine.

Recovery was extremely hard. I had to relearn to walk and couldn’t leave the hospital for eight weeks. Daily tasks left me exhausted, but I had support from nurses, my husband, family, and friends.

Living with side effects and adjusting to daily life

Fatigue and loss of appetite linger. I have chronic pain, osteoarthritis in both hips, and lymphedema in my leg. My pace of life has slowed tremendously. My dog has been vital for my daily motivation.

I get chronic fatigue now. So I can’t do as much as I could.

I focus on what matters and let go of perfectionism in housework. Getting through each day, ensuring my family is cared for, is my priority.

The importance of support from family, friends, and my employer

My husband has been unwavering. He has been an absolute rock. I couldn’t have done this without him. Seeing his pain has been the most difficult part.

My parents, despite their own health issues, visit and support me regularly. My friends, colleagues, and even my employer have gone above and beyond, providing gifts, visits, and patience as I adjust to ill-health retirement.

The impact on my mental and emotional health

I sought counseling, especially after being told the cancer was terminal. My biggest fear was leaving my husband and how he would cope.

I have learned to make peace with uncertainty and to focus on living each day as fully as possible. I’m at total peace with it now. It’s going to happen when it’s going to happen.

And until that point, I’m just going to keep living my life.

Shifting identity and living meaningfully

I’ve learned to savor the small things — dog walks, nature, time with my husband.

My identity has shifted; I’m told I’m strong and brave, though I don’t always feel it.

Raising awareness for vulvar cancer gives me purpose, and I have built a strong online community. Supporting others gives me pride and motivation to keep sharing and reaching women who might be afraid to talk about gynecological health.

I’m incredibly proud of the awareness that I’m raising. There is life with cancer.

Monitoring and looking ahead

I no longer have regular appointments, but I can contact my care team or palliative nurse as needed.

I am considering joining early-stage clinical trials, not for my own benefit but to help those who come after me, since direct treatments for vulvar cancer are lacking.

For now, I focus on making great memories, financial stability for my husband, and empowering women to check themselves and seek care quickly.

My advice for patients and raising awareness

If you notice symptoms, get checked. Don’t ignore discomfort or delay care. Even if a symptom is embarrassing, moments of awkwardness are worth it for your future.

Just go and get it checked out. What’s a few minutes of embarrassment over the rest of your life?

Be your own advocate and empower those around you. Vulvar and vaginal cancers need more attention and openness.

Thank you for sharing your story, Pippa!

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Share your story, too!

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Tags stage 4

Antibody-drug conjugate Arthroplasty Breast Cancer CDK4/6 inhibitor Chemotherapy Hormone Therapies Mastectomy Metastatic Patient Stories Radiation Therapy Surgery Targeted Therapy Treatments

Holding On to Hope: Tammy’s Stage 4 Metastatic Breast Cancer Story

Post author By Chris Sanchez
Post date November 1, 2025
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November 1, 2025

I was Given 18 Months–5 Years Ago! Tammy’s Stage 4 Metastatic Breast Cancer Story

This is Tammy’s story about life with metastatic breast cancer. She opens up about how her life shifted dramatically because of her experience. One day, she was walking five miles, and the next, she was in a wheelchair because cancer had eaten through her femur.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Tammy first faced breast cancer in 2014, after a misdiagnosed lump turned out to be far more serious than expected. After surgery, chemotherapy, radiation, and hormone therapy, she carried on with her life. But in 2020, pain in her hip and leg led to a devastating diagnosis of metastatic breast cancer. She shares how hard it was to process the prognosis, especially when her first oncologist gave her only 18 months to live. Rather than accept that, she became her own best advocate. She sought six different opinions, learned about treatment lines, and found a medical team that listened to and supported her.

Throughout her experience, Tammy emphasizes the importance of self-advocacy. She explains how staying informed about treatment options, asking questions, and seeking second (or sixth) opinions have been life-giving choices. Each progression of her metastatic breast cancer led to new therapies, such as hormone therapies, and she highlights the urgent need for research and clinical trials. In fact, she’s a passionate supporter of clinical trials because the drug currently keeping her disease in check didn’t even exist three years ago. This, she says, is why funding research matters; not only to extend lives, but also to improve the quality of life for people living with stage 4 disease.

Tammy also offers her insights on the emotional side of living with metastatic breast cancer. She talks about the weight of thinking that every holiday, birthday, or family gathering might be her last. She crochets baby blankets for her future grandchildren, not knowing if she’ll be present when they’re born. Yet she embraces the present moment and encourages others to grant themselves grace. Her strong faith helps her stay grounded, and she clings to hope in all its forms. She looks forward to seeing her children get married, to keep sharing happy moments with her family, and to continue finding treatments that work.

Watch Tammy’s video above and read her interview transcript below.

From walking five miles to being in a wheelchair overnight, Tammy’s stage 4 breast cancer story is one of resilience and hope
Six second opinions and numerous treatments. Why she refuses to give up
Learn why Tammy crochets baby blankets for grandkids she dreams of meeting
Understand why the hardest part for Tammy is the fear that every special occasion could be her last
See how hope, faith, and self-advocacy fuel her resolve

Name: Tammy U.
Diagnosis:
- ER-Positive HER2-Low Metastatic Breast Cancer
Age at Diagnosis:
- Stage 2B: 42
- Stage 4: 49
Staging:
- 2014: Stage 2B
- 2020: Stage 4
Symptoms:
- Severe back pain
- Right hip pain
- Left leg pain
Treatments:
- Surgeries: mastectomy, hip arthroplasty
- Chemotherapy
- Radiation therapy
- Hormone therapy
- Targeted therapies: CDK4/6 inhibitor, antibody-drug conjugate

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Transcript of Tammy’s Interview

My name is Tammy
My first experience with breast cancer was caught early, and by accident
Years later, I started experiencing pain
Learning that my cancer returned was devastating, because it’s incurable
My oncologist told me I was out of treatment options
What my current treatment looks like, and the plan moving forward
What people don’t understand about stage 4 breast cancer
It’s hard not to think that certain moments and events could be my last
My hope for the future is that manageable treatments improve the quality of life for stage 4 patients

My name is Tammy

I was diagnosed with early-stage breast cancer in 2014 and metastatic breast cancer in 2020.

My first experience with breast cancer was caught early, and by accident

I went in for my very first mammogram at the age of 40. They found a calcification or several calcifications that they were going to watch at that time. So they had me doing a mammogram every six months thereafter.

Two years later, after having four mammograms, they told me I was clear and I could go back to yearly mammograms. That was in June. I had found a lump in my left breast shortly before that June mammogram and brought it up. They said the mammogram was clear. “There wasn’t anything there, nothing to worry about.” And I should just get on with life. And so I did.

As luck had it or not, I tore my biceps tendon in January and was going to have my shoulder done, and I had to have a pre-op physical. So I went to my primary care doc and I said, “Hey, I’ve got this lump.” It was protruding through the skin. She took a look at it and looked at the mammogram, and she said, “You know, it’s just a cyst. Just have that drained if it’s bothering you.” So in February of 2014, I went in for what I thought was just a cyst drainage. I was joking with the surgeon and how he was going to make the scar so no one would ever be able to tell I had had surgery.

I was put under. When I woke up, I saw my husband and the surgeon in the hallway. The anesthesiologist was holding my hand, and I knew immediately before they said a word that it was not a benign cyst. So that spiraled into having a mastectomy, chemotherapy, radiation, and hormone therapy, which I was going to be on for ten years. And I went on with life.

Years later, I started experiencing pain

In 2019, I was having right hip pain. They did an X-ray and sent me to physical therapy, and said that it wasn’t anything.

In 2020, we relocated to another part of Wisconsin, and I had to establish care with a new doctor, which I did. I was having a lot of knee pain when I would run. It was during COVID, and there wasn’t much to do but run. I chalked the pain up to that.

I saw my primary care provider for it. She did an X-ray. She said I just needed some physical therapy. I was doing that for about six weeks, wasn’t making any progress, and eventually I just stopped going. And God bless my physical therapist, he called me one afternoon and said, “Hey, why aren’t you coming anymore?” And I said, “No offense, you’re a wonderful person, but you’re not helping me one bit, and I’m not going to waste my time anymore.” He said, “Let’s have you see one of our sports medicine doctors. Maybe they’ll have some insight I don’t have.”

So I met with one of those sports doctors, and he said, “Oh, this is simple. You have a torn meniscus, and we’re going to get in there. We’ll schedule it for surgery, and we’ll clean it up. You’ll be back running in six weeks. But first, we need to do an MRI.”

So they did the MRI. I didn’t even make it home before he called me. He said, “I don’t know how to tell you this because I deal with torn ACLs. That’s the worst news I’ve given people. But there’s something really wrong with your leg and the bone in your leg and your femur. Part of the knee. I don’t know what this is, but it’s way above what I see.”

I was referred to oncology then. A biopsy was done, and it was found that it was breast cancer that had eaten through my femur.

So I went from walking five miles one day to being confined to a wheelchair the next, for fear that it would fracture if I stepped down the wrong way. A PET scan later revealed that the right hip pain that I was complaining about was due to lesions on my right hip, and the L3, which was a benign issue, had completely fractured from cancer.

Learning that my cancer returned was devastating, because it’s incurable

Statistics for metastatic disease online through Doctor Google are very depressing. When I met with my oncologist and he told me that, at best, I could hope to live 18 more months, that was very hard to hear.

I immediately had my kids come home. My daughter who was a freshman in college, my oldest daughter, and my son who was living here. I sat them down with my husband, and we told them in person.

Honestly, death — that’s where I thought I was headed. And then there was a lot of anger that there were things missed along the way, and we were trying to process through how that happened.

I had no family history of cancer and no risk factors for it. I had the genetic testing done. And at that point, in 2014, I only qualified for the testing because of my age. But I didn’t carry any of the genes that you can see in breast cancer. I had genetic testing done again, not too long ago, because there’s so much more that they test for now than they did in 2014. And, by their standards, I still have zero risk of cancer.

My oncologist told me I was out of treatment options

My son was a sophomore in high school. I asked if I would see him graduate, and was told that that was highly unlikely.

I took the second opinion thing to the extreme. I got six. I wanted to make sure that I was completely comfortable with the path I was going to be on moving forward. So that’s kind of a standing joke. “Tammy doesn’t get a second opinion. She gets six second opinions.”

After talking to people and just doing my own advocacy for myself, I decided I needed to part ways with that oncologist. I didn’t feel that we were on the same page. And I also knew that there were other options for me. So I underwent a full right hip replacement. Stayed on the targeted therapy drug I was on for another full year under the guidance or the recommendation of my new oncologist. When that stopped working, we moved on to an oral chemotherapy drug, and I remained on that for a full year.

And then I had another progression, and was started on another targeted [00:16:30:00] therapy, an antibody drug conjugate, which was administered through an IV port. I had that treatment every three weeks. That started in April, and by the end of July, my scan showed no evidence of active disease.

I continued the same treatment until December, and then I stopped, because I was having my left hip replaced due to the cancer and the radiation, and all the damage that that caused. I had a series of failed surgeries for something that was supposed to be very simple, to the point where one of my doctors thought that I was going to have to amputate the leg at some point because of it, but I still have my leg. Then I resumed taking the same antibody-drug conjugate in July when my numbers started to creep up again. I’ve been on that ever since, and they’ve dropped significantly.

So the hope is that we’ll get back to no evidence of active disease in the next short while.

What my current treatment looks like, and the plan moving forward

Every 21 days, I have treatments on Tuesdays and Fridays. I go in and I get a white blood cell booster so that my white blood cell count will allow me to have treatment on Tuesdays.

I am fortunate that my side effects are manageable. I deal with the usual ones: hair loss, fatigue, and nausea. But I find them acceptable. This is what I have to do to stay alive. It’s just kind of a repetitive cycle. And you just hope it works for a long time to come.

Every time I’ve had a progression with the oncologist I’ve been seeing for the last several years, the first thing we do is look into clinical trials and my eligibility for those. There are some questions as to whether my estrogen receptor-positive cancer has mutated to a triple negative, and some biopsies have indicated it’s a possibility. That does kind of throw a little bit of a wrench in things. But we always look for clinical trials first before deciding on a treatment. So obviously, I’m a big proponent of those. And I hold out hope that I’ll be able to participate at some point. The drug that I’m on now wasn’t available to me three years ago. It’s a game-changer.

What people don’t understand about stage 4 breast cancer

Well, when I had hair and I didn’t look sick, or even now when I put a wig on and I go out, I think people fail to realize that I’m still in treatment, that I still struggle.

I was always go, go, go. I was the mom who was doing everything, who was involved in everything. Now, especially because I’m still not walking, I depend on people for everything in my day. And that’s very difficult. But stage 4, in general, when people see you, you get asked all the time, “Oh, when are you done with treatment?” People do not understand that you’re never going to be done.

They also don’t understand that you’re not going to die from stage 2 breast cancer. You are more likely to die from stage 4. And any research that we can do for stage 4 is going to benefit those early stages. But the statistics of living with stage 4 metastatic disease are daunting, honestly. I just passed my five-year mark from my official diagnosis, although obviously I was dealing with it longer than that, and I’ve lost so many people I’ve come to know in the metastatic community, and I just don’t think people realize that.

Somebody said, “What do you mean? You have breast cancer in your bones?” There’s just a lack of awareness, I think.

It’s hard not to think that certain moments and events could be my last

I tell people now, when I meet them after they’re first diagnosed, that they just have to grant themselves grace.

When I was initially diagnosed, I kept thinking, especially in that first year, “This is the last time I’m going to have a vacation with my family,” or, “This is the last time we’re going to celebrate a holiday or a birthday.” That was really, really hard for me, because every event seemed like it was my last one.

I specifically remember one time that my daughters were home and I had baked a cake. I had gone upstairs to my room to change. I came down, and they had frosted the cake for me, and it was the worst job of frosting a cake I had ever seen. I burst into tears and said, “I haven’t even taught you how to frost a cake. What else haven’t I taught you that I’m not going to be here to teach you in the future?”

So that mindset was probably the hardest part. You just have to learn to accept the moment that you’re in. Try to remain as positive as you can. I have a very strong faith that guides me in everything I do.

For me, the physical limitations are probably the greatest challenge. Because your quality of life always has to come first, and being pushed around in a wheelchair by your son or whoever is just difficult.

I can’t do things myself that I would want to do. I still hold out hope that someday, I will again.

My hope for the future is that manageable treatments improve the quality of life for stage 4 patients

Hope is my favorite word.

You just can’t give up hoping. I had listened to that doctor I saw early on, if I had believed him when he said, “I’m sorry, you’ve got 18 months to live,” I wouldn’t still be here. I don’t let people take away my hope.

I understand that hope looks different for everybody. One of my daughters just got engaged. She’ll be getting married next year. I never thought that I’d be here to see that day. Now I hope I’m here to see the next one get married, which will be the year after that.

So, you know, it’s just holding out hope for whatever that looks like for you in that moment. And just not letting go of that.

Thank you for sharing your story, Tammy!

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For the rest of this interview, watch our program replay ON DEMAND.

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